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Sensing the Sublime

The power of exploring the sublime to journey beyond the ordinary.

[Originally published on Medium.com]

Esalen Institute, Big Sur, December 2023

 

Standing on a cliff at Big Sur in Northern California, I experienced a profound sense of beauty and awe, even knowing that the waves thundering beneath me were among the most treacherous in the world. My inability to articulate this profoundly emotional experience did not diminish its staying power.

I’m not the first to sense it there. Big Sur, meaning “Big South,” is a majestic stretch of beaches, redwood forests, and rocky cliffs bordering Highway 1 from Carmel to San Simeon. In the 1950s, the area became a gathering place for creatives such as Jack Kerouac and Henry Miller. Back in 1962, the Esalen Institue, situated on a Big Sur cliff, had brought together pioneers in fields as diverse as psychedelics (Timothy Leary)  quantum physics (Richard Feynman), and political theory (Terence McKenna). In recent years, it’s been a haven for pioneers in tech. Even Don Draper’s character in Mad Men found inspiration there (in the series finale, he meditates on the Esalen hilltop, where it’s assumed he conceives a Coca-Cola commercial).

 

I had arrived for a retreat in Zen meditation, which involves cultivating a ‘beginner’s mind,’ but left having experienced something more: the feeling of the sublime. In our relentlessly fast-paced and technologically saturated world, moments that pull us into the realm of the sublime are rare. It’s a welcome opposing force to languishing, yet it goes beyond the sense of flourishing. As New Year’s resolutions get abandoned (‘quitter’s day’ is the second Friday of the month, and 80% of people fail to keep them by February), perhaps tapping into the sublime is worth our continued effort.

 

The sense of the sublime is a multi-layered experience that pulls together awe and reverence with a sense of grandeur beyond human comprehension. This broader connection with the universe is most commonly experienced in nature, as I experienced in Big Sur. However, art, music, and even a feeling of synchronicity can also inspire it. While it’s related to University of California Berkeley professor Dacher Keltner’s definition of “awe” and author Monica Parker’s elements of wonder, it’s not quite the same: the experience of the sublime is both philosophical and sensory. It’s an experience that transcends beauty, sometimes adding a tinge of fear in the face of grandeur. Edmund Burke’s concept of the sublime is an embodied, sensory-based experience, whereas Immanuel Kant conceived it as based firmly on reason and intellectual tension. At its core, an encounter with the sublime can have a profound and lasting impact, eclipsing the trivialities of daily life and offering a glimpse into something much larger than ourselves.

 

2019 study published in Frontiers of Psychology described a scale to measure sublime emotions toward nature based on two conceptual components: awe and inspiring energy. A 2014 functional magnetic imagine (fMRI) study published in Frontiers of Neuroscience found that experiencing the sublime—versus simply a sense of beauty—comes with distinctive brain activity. A more recent 2021 study in PLoS One expanded on this idea and found that nature-based stimuli evoked more intense emotional responses than art-based stimuli.

 

Even if the worst of the COVID-19 pandemic may be past us, 2023 was a year fraught with a surprise war and global economic uncertainty. We need moments of sublime to connect with those moments beyond explanation, moments that help soothe empathetic distress.

 

Also, 2023 was the year of ChatGPT, which has led to questions about the singularity, expanding on more philosophical questions about the cosmic purpose of the universe, but there were several moments ripe for the sublime: scientists discovered a mysterious star in the center of the Milky Way that seemed linked to another galaxy, a quantum physics entanglement experiment yielded an image of what appeared to be a yin/yang symbol, and a double rainbow appeared on the anniversary of September 11th in New York City.

 

The sublime experience can last for months: a study from the University of Pennsylvania found that astronauts frequently return to Earth with an increased sense of life purpose and connection to others after experiencing a sense of transcendence in space. The end of life can offer a profound, transformative experience akin to the sublime, challenging conventional narratives about death and dying. One need not go to the coast of Big Sur to find it. Those who are attentive can experience it every day: the quiet beauty of a sunrise, the laughter of a loved one, or a moment of genuine connection.

 

Psychologically, the experience of the sublime can be a healing balm for the modern soul. In a world where our attention is fragmented by constant digital notifications and a relentless news cycle, the sublime offers a respite. It demands our full attention, pulling us into the present moment even as it lifts us out of the ordinary, offering a perspective that is both humbling and elevating. It reminds us of our smallness in the face of the vast, complex world we inhabit.

This perspective shift can replace egocentric concerns with a sense of unity and oneness with the universe. The sublime is not just an escape from the mundane but a gateway to both a deeper understanding of life and a profound sense of well-being. As we navigate the complexities of modern existence while entering a new year, the pursuit and appreciation of the sublime might be more essential than ever.

 

Should serendipity play a role in our decision making?

*Originally published in the Globe and Mail*

greg rakozy c/o Unsplash

 

This particular meeting of the Serendipity Society begins the way most meetings do: a round of re-introductions, knowing smiles, and recounting recent travels and milestones. In 2019, the society held its first international conference in London. Since then, it has held multiple topic-themed symposiums, and this one was highly technical: recommendation algorithms (the sort that Netflix may use to suggest other programs you might enjoy).

Two members realized they had vacationed in the same spot, though I was assured it was merely coincidence, not serendipity. Only one unfamiliar face was present: mine. I was there upon the invitation of Stephann Makri, senior lecturer and director of the Human-Computer Interaction Design Program at City University of London.

For the past 15 years, Dr. Makri has been hunting for the recipe for serendipity, which he defines as an “unexpected circumstance that yields valuable or unanticipated outcomes.” His research focus is on serendipity in digital landscapes, which can affect our use of social media. Dr. Makri has also described strategies for creating serendipity: In 2013, his SerenA project looked more deeply into how serendipity can be engineered in digital spaces, which can present a paradox.

“The more you try to engineer serendipity, for example through a recommender-system algorithm, the more you might start to expect the unexpected. If that happens, the outcome may not have the same weight, or gravitas, to you any more. There’s a risk serendipity can become an experience that feels contrived,” he tells me in an interview.

Established five years ago, the Serendipity Society is comprised of cognitive scientists, philosophers, computer engineers, physicists and so forth. The members meet regularly several times a year to interrogate the phenomenon of serendipity, and how it plays a role in how we understand and shape our futures, whether it be in our personal lives (they have collected stories of romantic partnerships that appear to be the result of serendipity, for instance) or in scientific discoveries.

Serendipity in scientific research is common: Louis Pasteur was once quoted as saying luck “favours only the prepared mind.” Penicillin was discovered in 1928 because Alexander Fleming was researching the Staphylococcus aureus bacteria. One of his petri dishes became contaminated with a mould that had antibacterial properties (Penicillium notatum), creating a circle on the glass. Sildenafil (Viagra) was discovered by Pfizer in 1989 during research for anti-hypertensive and anti-angina (chest pain) treatments.

The question of how exactly serendipity can be advantageous in scientific discovery was explored in 1958 in a paper by two sociologists, Bernard Barber and Reneé Fox. Barber and Fox analyzed two separate experiments involving rabbits and the enzyme papain, which is derived from the papaya fruit. Both would find the same result, but only one used the experience to make a serendipitous discovery that would go on to have a world-changing impact on both medicine and industry.

In 1956, Lewis Thomas, a physician and researcher in the department of medicine at New York University, conducted a lab demonstration to show that lesions in cardiac and blood vessels could be due to the presence of various enzymes in the body. He injected rabbits’ ears with papain, which caused the ears to wilt and become floppy. He would eventually discover that papain caused the ear cartilage to lose a large part of its intracellular matrix and that it was, in effect, dissolving the bonds between proteins. Eventually, this property would lead to the discovery of various commercial applications for papain, including the production of leather goods, detergents and cosmetics, and the process of meat tenderization.

Aaron Kellner, a professor in the department of pathology at Cornell University, had actually observed the same effect when injecting rabbits’ ears with papain in a 1954 experiment, but he was not as interested in the result and pursued other pressing research questions instead (eventually, his other work led to the creation of a reliable blood transfusion network for New York State). As Barber and Fox described it, a key element that drove Thomas’s interest in papain (other than having the time to explore) was having reached an impasse on other research projects, which allowed his pursuit of the serendipitous discovery. He had remained obsessed with his observations, analyzing them until they led to a formal discovery that had a purpose. Indeed, serendipity can occur at the intersection of “chance and wisdom.”

 

Adrian Bejan, a Duke University-based mechanical engineering professor, has possibly the most “rational” definition of serendipity. It’s “the way to make discoveries, by accident but also by sagacity, of things one is not in quest of. Based on experience, knowledge, it is the creative exploitation of the unforeseen.” Dr. Bejan, who is a prolific researcher and scholar with a lengthy publication record, likely experiences this firsthand on a regular basis. But what about outside of science – what do serendipitous encounters actually “mean,” especially as they relate to making decisions?


When I met a stranger on a train in England two years ago, he shifted my views on serendipity. We were both on our way to the English Midlands, and the car we were seated in was sparsely populated. My stop was first. A few hours later, I grabbed the return train, which ran every 30 minutes. The same stranger was on this train, which was now packed with commuters going back to King’s Cross Station in London. As I was departing the crowded train, I became caught in the door between cars as it closed and felt someone behind me pull it open. Indeed, it was the same man. I mumbled “Thank you,” and rushed off to my next commitment.

But just before going through the turnstile to catch the underground train, I realized how unusual it was to see the same stranger twice in one day, and for that same person to be the one to pull a crushing door open for me. So I went back up and thought I would at least thank him if he happened to be there. Indeed, he was, and so I did. Smiling, he asked if I had been on the train earlier in the morning, and he suggested we meet a few days later. He was willing to come to my area, and cancelled a previous commitment to go to Cambridge in order to do so.

We met at a pub and enjoyed a nice chat, but to me it wasn’t particularly eventful or with consequence. At some level, the encounter had created a sense of wonder and expectation – the latter of which wasn’t quite met.

So if serendipity gives us a sense of “meaning,” why did this feel like such a letdown? Surely, the statistically improbable alignment of our meeting must have been for a reason, if we are to believe in the chance meet-cutes of films like 2001′s Serendipity.


In 1754, a British aristocrat named Horace Walpole wrote a letter in which he coined the term “serendip.” The letter referenced a story that was translated from Persian to Italian and finally to English – a fairy tale called The Three Princes of Serendip. The tale involved a camel and three brothers who experience a series of “happy accidents.” Walpole referred to this phenomenon as “serendipity.” The emphasis was on the feeling it exudes – a sense of joy or wonder, but also another thing: gravitas, a sense that it was all for something greater.

The coronavirus pandemic, above all, has taught us that the future is hard to predict. We still are unable to plan as well as we might like. But what does this mean for serendipitous encounters? Does the feeling we get when we experience serendipity suggest at some level that the future is predetermined by some mystical force? Anxiety as a disorder involves a pathologically negative stand around our futures (i.e. worst-case scenarios), so perhaps the experience of serendipity offsets this. A sense of the predetermined can offer us some comfort when the ability to forecast is reduced.

Christian Busch, a professor at New York University and the author of The Serendipity Mindset (which offers strategies on how to set ourselves up to experience serendipity more often – namely through creating a “serendipity field”), believes we can indeed lean on it to help in uncertain times.

As such, serendipity, or the perception of it, and the weight or gravitas we give it, alleviates some of this anxiety by giving us the sense that the future may be predetermined at some level, allowing serendipitous encounters, such as the one I experienced on the train, to provide momentary glimpses into that very future.

“Often, elements of happenstance can really elevate the sense of weight you might put onto a situation, because it seems so implausible,” Dr. Makri says. “Important events that happen through happenstance are so rare that we might attribute more meaning to them.”

But after my experience on the train, I’m left wondering if serendipity may just be an extension of the story Walpole once referenced: simply a fairy tale, but the adult version. Something to hold onto to make us believe in predestination, or a deus ex machina rescue from a potentially less desirable fate.

Instead, perhaps we should approach serendipity as “data points,” removing the gravitas we allocate to it. If every other element of a person or situation doesn’t feel quite right, a serendipitous moment involving a person or situation should not hold the weight it does, in terms of affecting decisions. In other words, we should first decide to be either a Lewis Thomas or an Aaron Kellner – Kellner didn’t allocate gravitas to his findings and still lived an accomplished life via another path. However, if the rational and emotional elements align, we can view serendipity as a spiritual or chance element that can add that potent gravitas to a decision that already feels fairly right for us, especially decisions that involve a person, place or situation where some uncertainty exists. Perhaps its role is to bring us comfort and ease remaining doubts.

In his book Fluke, mathematician Joseph Mazur argues that what we often presume to be serendipity is merely attributable to the “weak law of large numbers,” a theory first formalized by 17th-century mathematician Jacob Bernoulli. Effectively, a small chance is still a chance if the occurrence were to occur several times. This understanding can help us remove the gravitas we allocate to serendipity, and see it more objectively within a wider context of information.

The idea that “when you want something, all the universe conspires in helping you to achieve it,” as made famous by Paulo Coelho’s The Alchemist, is seductive, even to the most ardent skeptic. But placing excessive gravitas on serendipity ends up creating a form of bias that can in fact blind us to other, more suitable paths, leading us astray from the very destiny we’re better suited for. Given that we rarely have access to the counterfactual of our lives, we cannot possibly know whether a circumstance is serendipitous or not. Instead, the human tendency toward apophenia may in fact be at play. For instance, it’s a charming idea to know that even the Old Persian word serendip is a precursor to the Arabic word Serendib, another name for Sri Lanka (where my parents hail from).

Dr. Makri believes we can reconcile this dilemma with awareness, yielding the uplifting and charming feeling from the experience of serendipity as an intrinsic benefit in itself, but without necessarily feeling as though the moment needs to be excessively influential in our decisions.

“If serendipity involves making meaning through connection building, then that’s how you can help to shape your own future – by making as many meaningful connections as you can. But you have to be agile in how you respond to fast-moving situations, because otherwise the opportunity may pass you by,” Dr. Makri says. “When serendipitous events happen in life, their comforting nature can uplift us in a way that breaks the monotony in our more mundane parts of life.”

On Mirrors, Teachers, Expanders

(originally published on Medium.com)

Shiva Performing the Dance of Bliss while Vishnu and Brahma Provide Musical Accompaniment (or...a depiction of mirrors/teachers/expanders!)
More:
Original public domain image from Los Angeles County Museum of Art

I don’t often (or ever!) write about spiritual elements of health and healing (not to mention ideas with no references or ‘reporting’ per se!) but one concept resonated with me recently, after someone sent me a viral Tiktok video (!). The second point made — about mirrors/teachers/expanders seems relevant for life on and off social media, as well workplaces/companies because they are comprised of *people.*  It’s a helpful framework to ‘reframe’ interactions with a growth mindset as well, and understand it all as a ‘dance’ we consciously participate in (or decide not to). However there aren’t any clear definitions, so this is my attempt here, as it seems to have resonated with close friends and loved ones, so it might be of interest to readers here, especially as it suggests an intersection between psychology and spirituality.

Of note, random passer-bys etc aren’t ‘relationships’ by definition, so those don’t really count in terms of our personal evolution unless there’s some kind of conflict or interaction that triggers us in some way to engage (it’s also a reminder that engaging ‘creates’ an energetic bond, which means energy, time, etc — why the most compassionate/conscious thing is not to engage).

Alright here we go. Relationships (friendships, family, coworkers, partners) fall into three categories:

1)Mirrors, 2)Teachers 3)Expanders

1)Mirrors

People that mirror parts of us we prefer not to confront. These deal with core wounds from childhood or early adulthood. Things like: needing to be perfect and moral (in order to be worthy/loved/feel secure and grounded and not anxious or abandoned), needing to please everyone and ‘be nice’ (in order to be worthy/loved etc), needing to fight/push for things (in order to secure resources/help/survive etc — this leads to envy and scarcity mindset)

(a) mirrors can have ‘good intentions’ for us ('helpful mirrors' or 'expansive mirrors')

…even if they bring up core wounds (unintentionally), the relationship helps us heal those wounds namely because the ‘mirror’ (other person) has the intention of kindness, compassion, patience, love etc (in other words: good intentions). This intention has nothing to do with us, but everything to do with how ‘healed and self-aware’ they are of their own triggers.

How can we sense their intention? How energized, at peace, relaxed, etc we feel around them *even if* parts of us feel triggered *at times*. Leaning into this allows ‘mirrors’ to transition into teachers and even expanders.

(b) mirrors can have ‘bad intentions’ for us ('harmful mirrors' or 'constricting mirrors')

…and they trigger our core wounds intentionally because their own core wounds dominate their actions and thoughts about others. They may take actions (overtly or covertly) to sabotage, harm, etc. An example might be a mirror with a core wound involving scarcity — this manifests as envy. They may be envious about someone’s job/income, apartment/house, partner/friend, kids, life stage, appearance/looks, etc. They may then sabotage the person they are envious of through gossip, overt or covert actions (including comments), energetic ways (“they don’t deserve this/them/etc — I hope they lose it.’) because they believe that by ‘taking’ something away, it increases their abundance (it’s actually the opposite: this mindset causes *more* scarcity in the person holding those thoughts/pursuing those behaviors).

We can sense this intention energetically by how we ‘feel’ (restricted/confined/nauseous etc) which goes beyond simply feeling triggered (a trigger feels like a ‘poke from the inside’ whereas a harmful intention feels like a ‘poke from the outside’)

*Boundaries are key for this type of mirror — compassionate distance (so not anger or vengefulness) is best. Confronting or discussing this is of no use as they lack self-awareness; once their core wounds are healing they may make those shifts on their own**

A few things to note: “bad mirrors” tend to have *different* wounds compared to ourselves. For instance, a bad mirror triggered by envy in another is more likely if the ‘subject’ of the envy does not have scarcity as a wound.

Case study on this distinction:

Lena is a [conventionally] beautiful woman who is intelligent and dynamic, passionate and confident. She enjoys a healthy relationship, fulfilling work, and a beautiful home, and generally has an ‘abundant’ mindset. Her own wounding (and opportunity to heal) may be around the value of ‘freedom,’ and feeling triggered by individuals who attempt to control/suppress/confine her. This may manifest in various ways: rebelling against the rules, becoming upset if a friend makes a suggestion to ‘change’ in a way that seems confining, and so forth. Her ‘good mirrors’ are those who intend to help her integrate, even if their suggestions can be triggering (and thus invitations to evolve/heal). For example, if a friend invites her to a journalling workshop — Lena may, if unintegrated, interpret it as a controlling exercise to change an existing routine, even if the friend has only compassionate intentions.

On the other hand ‘bad mirrors’ are those that *may* outwardly express a desire to control (e.g. comments like “you should be more like…[confining/small]”) but more often than not the deeper issue here may be an entirely different wound such as scarcity, which, to use the same example, runs against Lena’s ‘abundant mindset.’ Her ‘bad mirrors’ may be triggered by: Lena’s confidence, beauty, relationship, home, profession, and so forth, which can come through as aggressive attacks (directed to her about her home, by someone who is ashamed of their living situation), passive-aggressive comments (about her appearance, by someone ashamed of their weight/physical appearance) or gossip (directed to others about relationship, by someone ashamed of their own relationship), sabotage (directed about her work performance, by someone threatened by her abilities).

Even if some of these comments come across as ‘controlling’ (e.g. ‘you should [cut your hair, move, do fewer presentations, etc]’ the deeper motivation here is envy(scarcity mindset). As such, even if Lena is aware and able to set boundaries, often the longer-term solution is compassionate distance, which may or may not invite the other into self-reflection and their own healing.

From a rational point of view, Lena may have trouble understanding the scarcity mindset/envy by others simply because it isn’t reflective of her own conditioning (and similarly others may have trouble understanding triggers around freedom/control). So, any attempts to rationalize or “understand” the behavior of ‘bad mirrors’ are rarely effective, and deference to boundary setting and/or distance remains central. This helps explain the common question 'why would they behave this way?' -- it's challenging to understand behavior that is an outgrowth of a wound we have no lived experience with (it appears 'irrational').

 

2)Teachers

These are individuals who have unique knowledge and/or experience (rational and spiritual) that allows us to expand our own lived experience and understanding of consciousness, our purpose, life, etc. They may have ‘more’ knowledge or experience or ‘deeper’ knowledge or experience (so age/life stage matters but only to a degree — it’s more linked to our ‘soul’s evolutionary stage’ which is different from human age/earth age).

We recognize teachers because we feel energized, peaceful, inspired and more curious about the world. We don’t feel triggered around them either — we simply feel more connected to ourselves and the universe.

 

3)Expanders

These are individuals who are, intentionally or not, able to amplify our desires and goals in life. This can be rationally (they simply ‘have’ the ‘things we want and need’ and can ‘provide’ them to us), spiritually (they are skilled at bringing forth their own desires/manifestations, and amplify ours in the process), or a mix of both. They help us see and feel what’s possible.

We recognize expanders because we feel inspired and excited but also ‘clear and confident’ about our desires. It’s a sense that ‘they want that thing for me too! they believe it as much as I do.’

One final point:

Good mirrors can also have expansive qualities and teacher qualities (and likely transform onto one or the other over time). While uncommon, it is possible for an expander or teacher to 'regress' into a good mirror (if we begin to feel triggered again/a new wounding experience leads to a new trigger) or a harmful 'bad' mirror. Example of a regression into a bad mirror:

~a formerly 'abundant' person who experiences financial and/or professional hardship, a re-wounding of a scarcity mindset, and envy

~a formerly 'secure' person who experiences relationship struggles (infidelity, a realization of a lack of alignment) and a re-wounding that results in envy/jealousy of another's relationship

~a formerly 'secure' person who experiences a shift in their appearance (e.g. weight loss) that has not resulted in a desired outcome (more confidence) and a re-wounding around learned helplessness (can lead to envy or obsessive/controlling behaviors around this wound)

 

So when it comes to our energy and boundaries, we must trust ourselves (use rationality but also how we ‘feel’ — and recognize and honor this). Choose wisely.

Adjustment Bureau – the issue of using ‘race’ to adjust medical care

(shorter version published in Nautilus magazine.)

 

The Adjustment Bureau

For decades, physicians have assessed, and treated, Black patients differently, citing both epidemiological evidence and physiological differences as a ‘correction for race.’ In the quest to provide ‘equitable’ care, has this ‘separateness’ perpetuated the very inequities it hoped to ameliorate?

 

Amitha Kalaichandran MD

 

‘Race is child of racism, not the father.’ – Ta’nehisi Coates

 

 

I

 

“So, what prescription management would you recommend?” My attending asked me. We had just admitted a Black male patient to our inpatient ward at a large teaching hospital. He had been in hypertensive crisis, secondary to kidney dysfunction – all as a result, ultimately, of poorly controlled Type 2 diabetes. After the initial crisis was managed, we needed to step him down to a medication he could take at home. The standard first-line medication was an ACE (angiotensin converting enzyme) inhibitor or an ARB (angiotensin receptor blocker). Every patient I had seen before then was on one of these medications.

 

But this was our first patient of African descent, which meant the initial intuitive answer – an ACE inhibitor – was wrong.

 

This patient would instead be prescribed a CCB – a calcium channel blocker.

 

Why? Because a series of studies in the early 2000s, which ‘adjusted’ for race (“Black” vs “non Black”) found that Black research participants had a suboptimal response to first line ACE inhibitors.  Instead, CCBs appeared to offer Black participants better blood pressure control.

 

I knew this well, of course, from graduate school training in epidemiology. It was called the “correction for race.” In other words: an adjustment to the final risk ratio (or odds ratio) based on the variable of race, which was typically binary (Black or not Black) and either self-reported by the research participant or determined by the researcher. The “correction” was a statistical adjustment meant to account for the confounding factor (the factor that can impact an association between the primary variable and outcome) of race. Other confounding factors included gender, body mass index, and socioeconomic status. In some instances, race was assigned to be categorical (meaning categories such as ‘Asian,’ ‘White,’ ‘non-White Latino,’ and ‘Black’) or binary (‘Black’ and ‘non-Black’).

 

In graduate school it was about numbers and statistics. But in medical school, coming face to face with a patient, and choosing a different approach, brought with it many questions. For one, the studies were based on African Americans. So why would a Black patient – an immigrant from West Africa in the case I described – attending a Canadian hospital, be treated the same way? Was the assumption, that there was some sort of biological difference, behind the patient receiving a different approach to care?

 

*

 

In 2004, the results of the African American Heart Failure Trial (A-HeFT), which randomized African American patients to the combination drug BiDil (hydralazine and isosorbide dinitrate) or placebo (though most were already on an ACE inhibitor) were published. The drug reduced the risk of death secondary to heart failure among self-identified Black participants. This led to the FDA recommending in 2005 that it be approved specifically for treatment of Black patients. Here’s the rub: only Black participants were included in the study, so whether patients of other ethnicities could benefit was unclear.

 

Race is a key social construct, and there’s no clear association with specific genes according to geneticists. Companies like 23 and Me and Ancestry.com misleadingly advertise their services as a way to determine ethnicity and ancestry (two separate but related ideas). They rely on a large pool of individuals who indicate in a survey where they believe their ancestry to be. That pool also provides DNA. Anyone that submits their own DNA becomes compared to the existing DNA that exists to determine their ancestry and ethnicity. There’s no comparison to a specific gene that marks African, Caucasian, Asian (and so forth) ‘race.’ An equivalent would be creating a study that obtained DNA and asked two questions: whether you take your shoes off when entering your house and your geographic origin. This would lead to a library of individuals who provided these three pieces of information. A cluster of ‘shoes off’ people in an imaginary country (geographic region) called Pandora might be found, along with the gene or allele frequencies of that country. Then, every-time someone else provides their DNA and one piece of information – whether or not they take their shoes off – their DNA gets compared to this larger library – with the results showing they are likely ‘from Pandora’ if they respond they take their shoes off. There is no biological reason per se, it’s simply an approach to categorizing an individual based on pre-existing geographic patterns.

 

As it turns out, later on, BiDil was found to have a potential genetic basis for action, so it’s likely that anyone with that particular gene variant may benefit from that drug. In other words, it should never have been a recommendation for one specific race. Since then, further ideas around ‘race-specific’ medications were disregarded.

 

We now know that, years after I cared for that patient, from a study published in early 2022, that prescribing a different first-line medication to Black patients may be linked to worse blood pressure management. As well, less access to the right medications for blood pressure is likely a bigger problem than the specific medication used. Another way to look at it: discrepancies are related to inequity, not race.

 

Underlying all of this are larger questions: how much were the differences found by those studies, and others, that inform the clinical decision for a given patient actually based on social factors (the social determinants of health, which include racism, lack of housing, lack of education, low income, and so forth, as opposed to simply what appeared to be surface level factors like race?

 

Indeed, is using race in a clinical decision-making algorithm doing more harm than good? To answer these questions, we must reconcile two eras as we enter a ‘post-COVID’ period:

 

The first is the era of ‘precision medicine,’ where we understand that personalized medical management – based on genetic factors is the future of medicine. Precision medicine asserts that biology as well as the environment that interacts with that biology (‘epigenetics’) is crucial.

 

And the second is the era of equity – ensuring ‘racial equity’ in everything from vaccine and pharmaceutical trials to the clinical setting. The era of equity brings unique calls to action and is an entirely different problem from the one that involves biology. We know for instance that Black patients face immense barriers to accessing healthcare – everything from pain management (something even celebrities like Serena Williams faced when giving birth), to how stroke prediction models are used, even how AI is used in hospital EMRs to predict risk of in hospital death (which I wrote about previously).  We even know that there is in built racial bias in how pulse oximetry tools measure oxygen saturation – a key element of COVID risk assessment and management. Even a large proportion of U.S. medical students and residents, as recently as within the last eight years, have reported believing harmful ideas such as that Black patients have ‘thicker skin.’

 

If the intention behind ‘race correction’ is to provide better, more equitable care, why does it seem as though it has led to the opposite? To understand this we must first journey into the history of how these adjustments came to be, and more importantly ‘who’ pioneered them.

 

 

II

 

Medical researchers in the US have collected data on race/ethnicity in research studies since the 1970s as a way to measure health disparities but also ensure that studies were more representative of the wider population so that any findings could be generalized to the public (what epidemiologists term ‘external validity’). Then, using the variable of race (as well as gender, education, socioeconomic status), analyses are performed to look at how a specific treatment or therapy impacted a subgroup. Here’s an important distinction though: when research studies lead to clinical practice guidelines, no guideline suggests using one approach or therapy over another based on gender, education, or socioeconomic status. No ‘correction’ exists for these variables either. Race stands alone: a social construct that’s misused as a biological one.

 

This approach to race has a deeply shameful history in Western-based medicine. Perhaps among the earliest on record was from Thomas Jefferson’s Notes on the State of Virginia, in which he wrote about ‘dysfunctional’ Black lungs, justifying slavery as a way to improve blood supply to further develop these lungs. Jefferson was suggesting that slavery was beneficial to Black physiology without noting that any lung differences likely had a social cause that was due to slavery and over-exertion.

 

Then came Dr. Samuel Cartwright, a Louisiana-based physician who presented “A Report on the Diseases and Physical Peculiarities of the Negro Race” in March 1851, at the annual meeting of the Louisiana Medical Association. Documenting ‘diseases’ such as ‘drapetomania’ (the tendency for an enslaved person to attempt escape) and ‘dysaesthesia Ethiopia’ (‘laziness’ among the enslaved), Cartwright would present pseudoscience guised as medical observations, alongside previous theories around brain size to explain why ultimately those who were enslaved deserved to be. His work would also lend further credence to racist scholars at the time who believed that Black people possessed a higher pain tolerance, in order to justify not using anesthesia. Among them: the ‘father of modern gynecology,’ Dr. J Marion Sims, whose experimental vesico-vaginal fistula repairs were done without anesthesia on enslaved women, even when white women were offered anesthesia for the same. On the other side of the pond, in 1872, Charles Darwin would approach an analysis of emotions similarly. In his book, The Expression of Emotions in Man and Animals he argued, inter alia, that non-White races were more subject to emotions that they were too ‘primitive’ to control. His evolutionary theories, as we know, supported ‘scientific racism.’

 

There exists a direct line between these 18th and 19th century beliefs and modern-day medicine. As previously mentioned, perceptions around Black pain can be traced to Sims and others. How medicine tests lung function , and even how its measured (spirometry), can be traced to Jefferson.

 

Years later, others would theorize as to the potential genetic underpinnings of this “correction” physicians make for differences for things like blood pressure, an attempt to find biological plausibility (part of Hill’s criteria of causality), treading on infamously dangerous territory previously prodded on by myriad biological-anthropological scholars who, taking the baton from people like Cartwright, Sims, and Jefferson, had attempted to perpetuate the superiority of Whites. But nothing has been found. In fact, in a New England Journal of Medicine article, prominent geneticists clearly state:  “Meaningful biologic differences simply do not exist between different races in a correlation or association.”

 

Indeed, any differences may be explained by sociocultural differences, much like how taking ones shoes off before entering a house is unique to some cultures over others: an adaptation that cannot be seen in biology or in our genes, and where an association will never be 1:1 with race or ethnicity. In 2015, University of Pennsylvania’s Dr. Dorothy Roberts give a cogent TED Talk where she posited that race is entirely separate from genetics. Years before, writers such as Malcolm Gladwell (in his New Yorker essay Black Like Them) have written compellingly about how race is a poor proxy for culture and experience.

 

This is distinct from seeing the variable of race as a way to ensure inclusivity. This magazine has for instance covered the issue of race in neuroscience but it’s clear that any anatomical differences are not secondary to biology, but rather that it’s sound practice to include reference images that span the globe, given that patients are culturally diverse.  Indeed, neuroimaging studies have only found cultural links (not racial ones) to brain appearance. As Nigerian-British writer Chimamanda Ngozi Adichie has expressed, the dangers of applying a single story to a group, to assume each individual has a similar experience are clear. When these ideas are applied to how we approach health though, it’s catastrophic.

 

*

 

Yet it persists. One of the most prominent examples involves an “adjustment” to kidney function. As described in a paper in 2020, the eGFR (glomerular filtration rate – the glomerulus is part of the kidney) is a rough indicator of how well kidneys are able to do their key task of filtering the blood of proteins and electrolytes. Creatinine is a protein that is a byproduct of muscle breakdown. High creatinine is a rough marker for damaged kidneys. It has been presumed that Black patients have inherently higher muscle mass compared with other races – regardless of BMI or physical habitus. This correction has been built into how eGFR is calculated (the 2009 Chronic Kidney Disease Epidemiology Collaboration creatinine equation), but perceptions have persisted in several clinical guidelines.  As such, advocates have continued to advocate against race being used in kidney treatment, which can position Black patients as a lower priority when it comes to dialysis or transplant.

 

These “corrections” are even being used in the tiniest in society – children. In a viewpoint in 2020 for JAMA Pediatrics, citing a reference to a 2011 urinary tract infection (UTI) clinical guideline, the authors posited that given race is neither binary nor biological, using different cut-offs for determining risk based on race both increased the likelihood that UTI in Black children could be missed or undertreated and that ‘Blackness’ conferred protection against UTI. The author, Assistant Professor of Emergency Medicine and Pediatrics at New York-Presbyterian Weill Cornell Medicine, Dr. Rachel Kowalsky, was prompted to explore the issue after noticing the 2011 guideline used race, whereas the earlier 1999 version, did not.

 

“It seemed so obvious to me, as a multiethnic person, that the categories White and Nonblack could not be operationalized in a place like New York City, where many people are multiethnic and multiracial. People with roots from all over the world would be thrown together into these categories based largely on skin color, and it didn’t seem possible that they could all share a common vulnerability to UTI, or common protective factor against it,” Kowalsky told me. “Race was being inappropriately used as a proxy for biology. And, because the AAP fever and UTI guideline applied to the majority of infants 2-24 months old coming to the ER or clinic with fever, an enormous number of children could be negatively affected by its use.”

 

After discussions with a close friend, a sociologist, who believed it was an unusual way to approach race, Kowalsky decided explored it through the viewpoint. The initial submission, to a very prominent pediatrics journal, was rejected. The killing of George Floyd invigorated her to resubmit.

 

“Exposure to racism and colorism has an enormous impact on health,” Kowalsky says, “In clinical research, there are many markers used for exposure to racism, from zip code to self-reported race to self-reported experience of racism.”

 

In their seminal 2020 commentary in the New England Journal of Medicine, Harvard Medical School Professor of the Culture of Medicine, Dr. David Jones, and colleagues carefully lay out several clinical practice guidelines that use the variable of race – typically ‘Black’ and ‘non Black’ – to decide on medical management.

 

“More and more people are realizing that tools that rely on dumb categories (e.g., a Black vs. White dichotomy) aren’t really scientific or evidence-based: it’s not defensible to put all humans into one of those two buckets. So, all of these tools are going to have to be reconsidered eventually,” Jones told me.

 

Examples run the gamut from endocrinology to pulmonology to oncology to urology to obstetrics and gynecology, to cardiology, cardiac surgery, and nephrology. In each of these fields there runs the risk of contributing to inequity.  Jones and his colleagues write plainly: “By embedding race into the basic data and decisions of healthcare, these algorithms propagate race-based medicine.”

 

In 2022, a study in JAMA Pediatrics aimed to take a quantitative approach and looked at 414 clinical guidelines in pediatrics. Of the 30% used race or ethnicity as a term, a potential negative effective was seen in 49.7% (a potential positive effect, meaning a lower threshold for care, was viewed in 28.6%). The authors concluded inequities could indeed be exacerbated more often than helped, by using race.

 

If the intention behind these “corrections” was to lead to more equitable care, how did it end up doing the opposite? As such, should they not be halted?

 

Indeed, over the last few years, these guidelines been called into question – first with lung function, and then for kidney disease and even for how computer (electronic medical record) algorithms are also skewed to incorporate these ‘corrections,’ for a variety of conditions. The pediatric UTI guideline Kowalsky referenced was retired in 2021. Yet , several current ‘best practice’ clinical guidelines still incorporate these ‘corrections.’  So, is this the right decision, or are we missing another, more sinister issue?

 

 

III

 

In 1954, in the Brown vs Board of Education of Topeka decision to desegregate public schools, the Supreme Court held that facilities that were ‘separate but equal’ were de facto unequal and violated the fourteenth Amendment, of which one pillar of said amendment was ‘equal protection’ as:

 

All persons born or naturalized in the United States, and subject to the jurisdiction thereof, are citizens of the United States and of the State wherein they reside. No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of lawnor deny to any person within its jurisdiction the equal protection of the laws.

 

Over two decades later, in 1978, legal scholar Archibald Cox defended the policy of affirmative action (Regents of the University of California v. Bakke) by resting on the argument that a diverse student body was inherently a positive force that acted to ‘cure’ historical wrongs (as Thurgood Marshall once said “They owe us”) but mostly that it would help all students navigate a more pluralistic world. This case then resulted in sweeping changes to admission policies several elite Universities across the U.S., despite the idea of “The Negroes Have Arrived,” as described in Plessy vs Ferguson.

 

Then in 1996, a Black businessman named Ward Connerly became a prominent backer of Proposition 209, banning affirmative action in California.

 

This June, the Supreme Court is expected to render a decision that will likely ban affirmative action nationwide. The central argument against it is that one applicant cannot be treated differently for the benefit of ‘diversity’ as a value in itself.

 

In other words, equity – that is equal access (which acknowledges a different starting point and various advantages and disadvantages that come with demographic factors such as gender or race) – to higher education, cannot be attained by impinging on the equity of others. The path to fairness cannot be through unfairness. Even if diversity itself is a social good, how diversity is defined becomes key. Is it simply a matter of race, or is it a matter of social factors or experiences of adversity or diversity in views? In matters of race, many underrepresented students that benefit meaningfully from  affirmative action have been those from the most affluent of society, but the idea that this is the majority is a myth. Race and social adversity don’t have a 1:1 association in the same way that a given gene is not 1:1 with race.

 

Might social adversity, not race, be a better marker of pluralism, if the goal is to prepare students for a pluralistic society (as Cox has argued).  This appears to be the preference among Americans polled.

 

So, ridding ourselves of the last remnants of ‘race-based medicine,’ much like pushing for ‘race neutral’ college admissions policies makes sense right?

 

This is where things get a bit more complicated.

 

 

IV

 

Precision medicine is an approach that aims to use genomics, and specific gene markers to better manage medical care. Unlike in classic epidemiology, Genome Wide Association Studies (GWAS) use the marker of race to ‘reduce the noise’ of other associated variables, and it helps ensure random differences are accounted for (e.g. height). This type of study is behind understanding immunology differences according to human leukocyte antigen (HLA) type, which can be associated with geographic region. HLA differences occur due to genetic drift secondary to exposure to different pathogens over the centuries (and why vaccine trials should be diverse geographically to account for this).

 

Markers like the MTHFR gene (which is involved in converting folate) are found across many geographies and ancestries. The same applies to the Apo-E4 gene variant which increases the risk for Alzheimer’s dementia. Even diseases with known gene mutations, such as sickle cell anemia or cystic fibrosis, lack a 1:1 association with Black or White race specifically. Precision medicine offers a way to do effectively what an optometrist would do before prescribing eyeglasses: test first and then provide a personalized approach as opposed to the alternative – one pair of glasses based on a superficial factor like age. Yet it too is limited.

Dr. Genevieve Wojick is an Assistant Professor in the Department of Genetic Epidemiology at Johns Hopkins Bloomberg School of Public Health who researches diverse populations and genetic associations. She believes that the variable of race is tricky when larger studies are translated into clinical decision-making.

 

“Race in most contexts is used as a proxy and disentangling it from what we really want to measure is a challenge  that would require research to distill these variables down into their sort of root causes…for example, is it race we want to measure or the effects of racism?” Wojick asks. ““I always find very ironic when it comes to biomedical research that there’s a lot of emphasis on precision medicine. But what they think is precise is only a small subset of that equation, right? There’s acceptance of some kinds of imprecision, such as race, which is a very imprecise variable. Ideally, if you think genetics play a role, if you would just test their genetics and treat accordingly. But this is not an option for most people for a variety of reasons. And so, providers are  stuck with these poor proxies.”

 

Wojick added that most research trials assume the default of “White race,” and that the problem persists. “At the root of it is this long legacy of scientific and medical racism which has persisted in some ways to the present day, with some people genuinely believing that there are biological differences between racial groups…instead of understanding that there’s no actual boundaries between people, right? That’s just not how it works.”

 

Dr. Joseph Wright, professor of Pediatrics and Health Policy & Management, and Chief Equity Officer of University of Maryland Schools of Medicine and Public Health believes that the precision medicine focus can run the risk of not being inclusive. “Consistent under-representation of diverse communities in trials that drive precision medicine approaches continues and has not been resolved.  Plus, the growing acceleration of genetic admixture across the world renders the underlying promise of precision medicine less reliable,” Wright told me.

 

In a 2022 article, Wright and his colleagues describe the example of atherosclerotic risk as a case where even if Black race is used ‘favorable,’ to early identify hardened arteries, it can still be problematic. They write: “One might argue that the ASCVD Risk Estimator may be protective in terms of potentially skewing early cardiovascular care toward Black patients. However, the inherent danger is directing differential treatment to Black versus White patients on the basis of a flawed phenotypic signal in the face of what might otherwise be identical underlying risk profiles. Incorporating race as proxy for the biological effects of differential lived experience is misplaced in this example.”

 

*

 

At this point in my reporting, I had formulated a clear sense of why race should be omitted from clinical practice guidelines. It seemed obvious, given the lack of any meaningful biological reason.

 

But that was before I met Dr. Gregory Hall at a medical conference this past February. Hall is a primary care physician based in Cleveland, the Medical Director of University Hospital’s Cutler Center for Men, and & associate professor in Internal Medicine at Northeast Ohio Medical University College of Medicine.  He wrote the book “Patient Centered Clinical Care for African Americans: A Concise Evidence-Based guide to Important Differences and Better Outcomes,” and his patient population is predominantly African-American, an ethnic group he also self-identifies with. His book emphasizes the key of establishing rapport and trust, and the role of equity. It also discusses differences in care for various systems – everything from cardiovascular care to diabetes and obesity, cancer care, renal disease, rhematic diseases, pulmonary and hematology disease.

In his conference presentation, he noted that African Americans as a group have the highest mortality, longest hospital length of stay, and low adherence to medications, all while being the least trusting of medical professionals. His conference presentation described a study that looked at the roots of prostate cancer. The study found prostate cancer risk was ten times higher in African American men compared to West African men, and so the cause was likely not along race lines but another factor: inequity.

 

Yet Hall disagrees with the principle of dismissing race in clinical decision making. He gives the example of how the biology may be involved or different, citing higher prevalence of HER2 negative cancers in breast cancers and the higher likelihood of aggressive prostate cancer that metastasizes to bone. Even if a specific gene is not known to be involved, he points out, the interaction of biology with the environment impacts disease. Some health organizations in his state of Ohio have stopped collecting race data in efforts to be race-neutral, but this worries him as it prevents an understanding of which communities may need more attention.

 

“What’s the biological impact of being oppressed?’ If we had a lab experiment where we oppress or subject to harsh treatment, any animal you pick would not thrive as well as those who aren’t oppressed – their cortisol is higher, for instance, which can increase their risk for a number of chronic diseases,” Hall told me. “The oppression and stress of being ‘not preferred’ may be causing some of these outcomes, and at its core, every action and reaction in humans is the result of a chemical reaction. It’s all biology.”

 

He shares how the experience of race is important in the clinical setting, and governs care. It relates to trust and empathy. “If I have an African American male in the exam room, I know I’m offering a different approach versus a small Asian American woman. The conversation is different,” Hall says. “The approach to starting medications is also different.”  Some of the broader discussion around removing race/ethnicity as a variable might be fine, but I’m more focused on the patients in front of me and what they need . . . and what makes them comfortable with what I prescribe.”

 

 

Hall recalls how things like essential neutropenia (low white blood cell count) often seen in healthy Black patients can result in being denied chemotherapy, and how indeed some African Americans may have a creatinine that falls just outside of the upper threshold of ‘normal’ range, which suggests the ranges should be expanded.

 

“My worry is if we take race totally out of things, racial/ethnic communities that have serious health problems that need targeted attention will not be readily identified.  Biologically we are 99.9% the same, and based on that alone, race really is a social construct, but that social construct has created the health landscape that we currently live in,” Hall told me.  “If we completely remove race as a consideration in our clinical thinking and how it impacts patients’ predispositions, treatment, health, and access to services, we will be ignoring some very critical aspects of their overall health.”

 

Hall’s perspective led me to understand that a deeper issue was indeed at play. It wasn’t simply about whether to remove race from a series of clinical decision-making algorithms.

 

To understand it, we must yet again turn back to the Brown vs Board of Education decision to identify another sinister force. That decision rightly pointed that separate is prima facie ‘unequal.’ This applies to medical care – treating one race differently is a breeding ground for inequity. But an African American legal scholar, based at Duke University, named Charles Payne uncovered why focusing on this legal precedent alone can be misleading.

 

V

 

In his 2004 essay “The Entire U.S. is Southern: Brown v. Board and the Mystification of Race,” Payne, now at Rutgers University, argued that the Brown vs Board of Education decision didn’t ultimately get to the heart of why racism persists, and would continue to persist in the U.S. He writes:

 

“Clearly, part of the miscalculation involved a widespread tendency to overestimate the power of the law to make change and to underestimate the degree of racial intransigence outside of the South. Those miscalculations, though, may reflect a larger pattern. What the initial misreadings of Brown tell us is that by mid-century, national discourse about race has been thoroughly confused, the nature of racial oppression had been effectively mystified. A part of that mystification was a process by which the systematic character of white supremacy had been reduced to something called “segregation…” John Cell points out that the term is ‘profoundly ambiguous and self-contradictory” and contents “that this state of ambiguity and contradiction was skillfully and very deliberately created. Confusion has been one of segregations greatest strengths and achievements.”

 

What Payne is getting at is that focusing on one narrow policy shift – even if the shift is the right one to make – can mistakenly leave us apathetic to the larger forces at work.  He understood that desegregation didn’t fix the larger issues of racism and oppression in this country, and it may in fact create the impression that all was well, leading to a more underground form of oppression.

 

To be sure, Jones and his colleagues were correct in saying that race may be useful in descriptive statistics but not in prescriptive guidelines, and that before using a guideline that involves race, physicians should pose these questions: Is the need for race correction based on robust evidence and statistical analyses (e.g., with consideration of internal and external validity, potential confounders, and bias)? Is there a plausible causal mechanism for the racial difference that justifies the race correction? And would implementing this race correction relieve or exacerbate health inequities?

 

These are principles that others, like Kowalsky, Jones, and Wright, have supported.

 

But removing race as a variable without acknowledging the other, deeper, systemic factors at play

runs the risk of winning a battle and losing – or even ignoring – the larger ‘war’ that is racism in medicine. The very outcomes that Jefferson, Sims, and Cartwright fueled are still at play, even if clinical practice guidelines no longer explicitly use race. Unbiased healthcare provision is not attained by removing these “corrections,” but a goal that can only be achieved through the harder path of shifting systemic barriers that consistently lead to worse health outcomes in Black patients.

 

 

VI: Representation without “Correction”

 

Beginning in 2020, several hospitals began to halt the use of race as a variable in their clinical decision making. The University of Washington stop using eGFR in their clinical decision making, and a multidisciplinary, multi-institution, group created an alternative “race-free” equation to assess kidney failure. In 2021, physicians from the University of Pennsylvania recommended that the American Thoracic Society revise their guidelines for assessing lung function/spirometry in 2021 (which was then backed by the New York City Health Commissioner). This was followed by a broader push by the University, even as a law professor (with a medical degree) at that same institution still perpetuates racist theories around intelligence.

 

Last year, in the Lancet Digital Health journal, Jones and his group published a paper recommending a revision to the atherosclerotic cardiovascular disease calculator without race. A few months later, a group in the University of Pittsburgh looked at Kowalsky’s claim and in their study in JAMA Pediatrics, using the data from sixteen previous studies (almost 180,000 children) found that replacing race with previous history of UTI and fever duration was found to be similarly accurate at predicting risk of UTI in statistical models. The American Academy of Pediatrics has offered another management guideline.

 

In mid-March, the National Academy of Sciences Committee on the Use of Race, Ethnicity, and Ancestry Population Descriptors in Genomics Research, of which Wojcik participated in, and which includes researchers, sociologists, and physicians, released a report entitled “Using Population Descriptors in Genetics and Genomics Research.” The report made clear the ongoing concerns around race, writing:

 

“Researchers have frequently used population descriptors as a shorthand for capturing the continuous and complex patterns of human genetic variation resulting from history, migration, and evolution. Of particular concern is the long-standing use of race, and more recently, ethnicity, as this shorthand. In humans, race is a socially constructed designation, a misleading and harmful surrogate for population genetic differences, and has long history of being incorrectly identified as the major genetic reason for phenotypic differences between groups. Rather, human genetic variation is the result of many forces – historical, social, biological – and no single variable fully represents this complexity…Race and racism have recently gained renewed attention from the U.S. scientific community. Recognition by the U.S. biomedical research community of the need to address the complex issue of population descriptors in genetics research has never been greater…this is a crucial moment to offer concrete guidance to the research community.”

 

The committee made thirteen recommendations for future research, with the following seven being directly tied to using race as a variable:

 

Recommendation 1: Researchers should not use race as a proxy for human genetic variation. In particular, researchers should not assign genetic ancestry group labels to individuals or sets of individuals based on their race, whether self-identified or not

 

Recommendation 2: When grouping people in studies of human genetic variation, researchers should avoid typological thinking, including the assumption and implication of hierarchy, homogeneity, distinct categories, or stability over time of the groups.

 

Recommendation 3: Researchers, as well as those who draw on their findings, should be attentive to the connotations and impacts of the terminology they use to label groups.

 

Recommendation 4: Researchers conducing human genetics studies should directly evaluate the environmental factors or exposures that are of potential relevance to their studies, rather than rely on population descriptors as proxies…Genetics and genomics researchers should collaborate with experts in the social sciences, epidemiology, environmental sciences, or other relevant disciplines to aid in these studies whenever possible.

 

Recommendation 6: Researchers should tailor their use of population descriptors to the type and purpose of the study, in alignment with the guiding principles, and explain how and why they used those descriptors. Where appropriate for the study objectives, researchers should consider using multiple descriptors for each study participants to improve clarity.

 

Recommendation 7: For each descriptor selected, labels should be applied consistently to all participants. For example, if ethnicity is the descriptor, all participants should be assigned ethnicity rather than labelling some by race, others by geography, and yet others by ethnicity or nationality.

 

Recommendation 8: Researchers should disclose the process by which they selected and assigned group labels and the rationale for any grouping of samples. Where new labels are developed for legacy samples, researchers should provide descriptions of new labels relative to old labels.

 

To “win the war” against racist medical care involves a longer, likely treacherous, road; one that must begin by meaningfully including the voices of those impacted. In the 18th and 19th century Sims, Cartwright, and Jefferson dictated how Black Americans were to be treated medically. Four centuries later the power dynamics aren’t entirely different. In other words, it’s not simply about race corrections in clinical practice guidelines – it’s about power: who has the power to make decisions for others – in this case whole groups of people. How are the power structures organized in hospitals healthcare centers that do research? Who are the decision makers who set the policies for how patients are treated, and how does this inherently disadvantage some groups over others even if it isn’t explicitly written?

 

“We need to collect much more comprehensive data about patients’ social and economic exposures, and do so longitudinally, so that we generate the data researchers need in order to understand what specific factors are generating the pervasive health inequities seen throughout US society,” Jones told me. This too will require a ton of work—but so did the human genome project. If doctors agree that something is important, then the needed research will get done.”

 

In Wright’s paper, he and his colleagues made several of their own recommendations as a step towards acknowledging that an anti-racist approach to healthcare would need much more than simply dropping race from clinical decision-making tools. For instance, they suggested physicians abide by the American Academy of Pediatrics’ Words Matter guideline, to reduce bias in how care is provided, while also acknowledging inequities as directly impacting health and access to healthcare.

 

“Even in the face of insurmountable evidence that race is not an independent biologic proxy, there is definitely a role for what race represents in terms of capturing differential lived experiences and exposures many of which are rooted in racism,” Wright told me.  “It will be necessary to rigorously incorporate socially determined factors that frame health status into the development of clinical care guidelines to address inequities, structural or otherwise, eliminate disparities and achieve more equitable outcomes.

 

In his essay, Charles Payne wrote that desegregation doesn’t get rid of racism, instead it should shed light on all the deeply rooted ways that segregation persists. Removing affirmative action in college admissions shouldn’t lead to a race neutral approach to education – it should instead consider how social inequities, many fueled by the social construct of race, often begin years or decades (and generations) earlier, and thus, so should interventions, to level the playing field.  It remains to be seen if the decision on this policy, as expected in June, will view equity through this lens.

 

“If we can help people address their racial biases rather than suggesting that they don’t really exist or that race doesn’t matter, we have a better chance of moving the needle,” Hall told me. “The only way to achieve progress in African American health is to name it and address it head-on. I also firmly believe that this debate is a critical, and inclusive, component for improving African American health and no medical decision should be purely race-based.”

 

Indeed, to move from “race-based” to race conscious medicine requires bravely challenging the very structures that were responsible for creating the healing profession in the first place. As Wojick pointed out ‘there are no boundaries between people.’ Will the profession, and those within it, be courageous enough help dissolve those boundaries, even the ones the system perpetuates in order to remain vital?

 

“To be ‘race-conscious’ of something is to consider it as part of the decision-making process. As a start, when making far-reaching decisions that impact the African American community, having an expert in African American health in the room would be more valuable than not having one contribute,” Hall told me. “Most of the race-based mistakes were driven by bias, not true science, and there was no one Black in the room to question the decision. Now that we have an opportunity to contribute (in some settings), I’m sure better, more solution-focused decisions can be developed.”

 

 

 

 

 

An Opinion Pandemic

Contrarian viewpoints on Covid-19 policy in mainstream opinion journalism risk provoking dire consequences.

 

Credit: Rawpixel

 

Iogolevitch’s opinion was invaluable. For one, he argued that the term “Spanish flu” was incorrect, and that “pulmonary flu” was more appropriate. More importantly, he advocated for isolating infected cases, ventilation, and supportive care. He warned against transmission in children, and advised the appropriate use of medications. He also, humbly, lauded the efforts behind finding a vaccine while also emphasizing the need to educate the public about disease transmission:

“Thanks to the public health officials of this country, you appear to be on the eve of the practical application of a vaccine… I think your health authorities are on the right track… the public should be made acquainted with the disease through lectures, printed pamphlets, newspapers… in a short time the public may be taught the necessary fundamentals of the disease… such as not to cough or sneeze without a handkerchief.”

The Times appeared to heed his call to the key role newspapers play in impacting public understanding of the virus, increasing regular reporting of the pandemic such as the enforcement of fines to ensure public health guidelines were followed, and educating the public on the promise of vaccine research, all while warning them against ingesting “cures” that could “do more harm than good.” (La plus ca change!)

Portions of advertising space were also reallocated to public health messages that encouraged readers to wear masks and follow disinfection recommendations. That said, despite experts suggesting the pandemic had ended, and it was the time to reflect on learnings, transmission took a long time to curtail. After 50 million deaths, almost 700,000 of which were in the U.S., the last case was detected in April 1920.

Arguably, Iogolevitch’s views were influential in shaping how the Times and other newspapers reported on the pandemic, which then impacted public understanding and opinion, all of which collectively helped drive widespread behavior change. This illustrates that during a pandemic, it’s not just the reporting on the pandemic that matters; the opinions shared by experts also matter.

Over the last 18 months, with the influx of thousands of op-eds focused on the pandemic, we’ve seen the impact of airing contrarian opinions. In March 2020, a viral piece published by the Times, by David Katz, MD, a physician with expertise in nutrition, called for keeping businesses open.

A few days later, Trump used the same language from the piece to justify the administration’s inaction. As one journalist pointed out, this didn’t go unnoticed, suggesting that the op-ed may have, to some degree, either influenced Trump’s choices, or was used to justify his a priori plans.

One year later, an article in The Atlantic, by the economist Emily Oster, was similarly perplexing — another argument for a “laissez faire” approach to pandemic planning, this time applied to children. The blowback by infectious disease physicians and epidemiologists was huge, taking the form of an ad hoc scientific peer review over Twitter (as a disclosure, I consult for the Twitter health design team to support more productive disagreements on the platform), and while Oster issued a clarification on social media, the article itself still lacks a correction. It became weaponized by libertarians, and more recently, referenced in a testimony (and subsequent appeal) against mask mandates for children in Florida.

Then, earlier this month, another op-ed, by oncologist, Vinay Prasad, MD, MPH, called into question masks for children, only having been met by similar criticisms from epidemiologists and pediatricians. It appeared to be weaponized by anti-maskers and Governor DeSantis’ successful appeal may have benefited from this counterpoint narrative. While “children are not little adults” is an adage in pediatric medicine, which often applies to drug dosing, it doesn’t typically apply to standard practices like helmets, masks, seatbelts, and so forth — the potential trade-offs are usually worth it to prevent transmission at a time when pediatric cases, hospitalizations, and deaths are surging in this vulnerable unvaccinated group.

But the core issue here goes beyond any one self-described expert’s opinion. To make the criticisms solely personal is to fail to see the underlying problem. This dilemma has less to do with any specific individual, and more to do with the processes in place among newsrooms across the country to vet these opinions, including who deserves a platform (and who doesn’t), and whether the opinion offered is supported by sound data, all on top of the traditional challenges readers may face when discerning meaning from opinion journalism.

The idea to separate opinion from news was credited by the founder of the New York Tribune, Horace Greeley. Now there are codes of ethics for opinion journalism, and some newsrooms have their own. But this is complicated by the fact that most readers still have a hard time distinguishing between news and opinion, and efforts to label sections as “ideas” and “essays” may not always help with this distinction, particularly if they are written by an individual that “appears” to be an expert on pandemics.

At a time when editors may be burnt out, but when readers still expect quality data-informed advice, and where ad hoc scientific “peer review” on social media has limited impact (and fuels mob justice), we need a different approach, one that addresses two main problems. First, to what degree is expertise and credibility required when opining about an active pandemic, especially on policies by the CDC, and how best can editors determine this? Second, during an active pandemic, should the publication standards for pandemic-focused op-eds be higher, knowing that the consequences of readers integrating this information may be immense, potentially even impacting pandemic prediction models themselves?

The first issue involves expertise and credibility.

A common argument made by epidemiologists and infectious disease experts against the Oster, Prasad, and Katz op-eds are that they shouldn’t have been published because the writers lacked the specific expertise in the area they were commenting on. While this is an appropriate criticism
(we wouldn’t turn to an infectious disease expert to advise us on the economy of the country, the best chemotherapy protocol for a form of breast cancer, nor how national nutrition policy should be overhauled) it doesn’t heed the value of what “outsiders” — non-scientists and scientists alike — offer to the public conversation. Iogolevitch, despite being a physician, was an outsider by virtue of being a new immigrant who wielded no power compared to Surgeon General Blue or Lieutenant Colonel Doane. Moreover, we need only turn to Rachel Carson’s Silent Spring as self-evident. Carson was a citizen scientist, not an expert on environmental pollutants or human health, yet her outsider perspective helped shift public opinion, including that of countless scientists who resided in echo chambers, some who were unduly influenced by industry, and were altogether unable or unwilling to see their blind spots.

Echoing Thomas Kuhn, Carson spoke to the defining feature of science being that it evolves, including in her book an elegant quote from Johns Hopkins Professor Carl Swanson, that “others” are crucial to that evolution: “Science may be likened to a river… it gathers momentum with the work of many investigators and as it is fed by other streams of thought; it is deepened and broadened by the concepts and generalizations that are gradually evolved.”

As political science writer Philip Tetlock has written extensively about, experts are often blind to gaps in their understanding, which justifies why we need humble nonexperts in the room. As such, the downfall of many contrarian op-eds during this pandemic is at least in part due to a lack of intellectual humility; that is, the clear idea that their view is one of an outsider having appraised the evidence, but that the view is subject to change as understanding evolves. Indeed, if high quality traditional journalism is “balanced,” so too should opinion journalism be forceful yet flexible, especially so with opinions that run counter to established public health recommendations.

The second issue is whether an active pandemic necessarily raises the standards for pandemic-related opinion journalism.

This is specifically the case now where major news outlets are cosplaying as the main source of public health information, given the limitations on traditional authoritative bodies like the CDC. Compelling opinion journalism is supported by data and evidence. But who exactly is the judge of this evidence?

Unlike peer reviewed science, the judges, in this case editors, often do not have the deep expertise to scientifically appraise the quality of evidence used in an article; they can’t be expected to. Alas, that judgement rests primarily on the individual submitting their opinion, and their self-assessment of both expertise and ability to appropriately apply the data. The Katz op-ed was not buttressed by relevant scientific data, which was perhaps expected given that the pandemic was in its earliest weeks and such data was not available. As several infectious diseases experts pointed out, the Oster op-ed used sound economic modeling assumptions, but extrapolated these assumptions to epidemiological data (the crux of the concerns raised involved the conclusions perceived as erroneous). With the Prasad op-ed, as his critics pointed out, the overreliance on one small trial that wasn’t replicable and lacked external validity, rendered his main argument thorny. But what’s particularly puzzling with Prasad’s op-ed is that he co-wrote an excellent textbook that describes these very research limitations in compelling detail, and why they often lead to medical reversals.

To be clear, all three authors were likely well-intentioned in their efforts to provide a contrarian perspective; it’s the assessment of how these perspectives are weighed in mainstream media, during a time of immense uncertainty, that becomes a challenge.

A similar issue, around assessing expertise and the application of evidence, is present in the justice system with medical expert witnesses: Some states leave the judgement of medical expertise, and the application of scientific evidence, to a jury and judge who typically lack scientific training; others leave the determination to the expert’s professional peers who may be incentivized to support a colleague; both are imperfect.

During a pandemic, the stakes of misjudging expertise and the appropriate application of data, are high. One poorly supported opinion can be used to justify inaction or disobedience, which could then fuel higher transmission rates. Failing to have high standards effectively poses the same harm as the Tom Cotton op-ed controversy, but the consequences to flawed public understanding may be immediately dire and traceable, through the larger ripple effect on cases, hospitalizations, and deaths.

These two points — on expertise and standards — inevitably run up against arguments around free speech and censorship, which harkens back to another pressing issue in 1918, which was Wilson’s concern that contrarian opinions about the war, namely anti-war sentiment, could pose a risk to the populace. This led to the passing of the Sedition Act of 1918, which also covered which opinions would be voiced in the media (including newspaper editorial pages). The justification was that the common good of winning the war was held in higher esteem as compared to any individual’s right to protest against the war publicly. Seen as extreme, Associate Justice Oliver Wendell Holmes put forth a test the following year for assessing whether the Sedition Act could be applied, the “Clear and Present Danger Test” (bold emphasis mine):

“The question in every case is whether the words used are used in such circumstances and are of such a nature as to create a clear and present danger that they will bring about the substantive evils that Congress has a right to prevent. It is a question of proximity and degree. When a nation is at war many things that might be said in time of peace are such a hindrance to its effort that their utterance will not be endured so long as men fight, and that no court could regard them as protected by any constitutional right.”

Notably, the Covid-19 pandemic has been likened to war by the very nature that it requires collective action and cooperation in order to defeat the enemy named SARS-CoV-2. Holmes’ attempt was to create a more objective way of measuring when free speech should be curtailed for the sake of the war, and more broadly for the public good. (Of note, libertarian sentiment against pandemic regulations was uncommon in 1918, possibly because the broader libertarian value around winning a war, and the associated freedoms, was perceived more salient.)

So how might we reconcile these two broad issues?

First, ideally, newsroom opinion sections should have at least one editor with scientific training and experience in critical appraising research studies to provide insight around whether a submission, regardless of the author’s titles, is supported with valid data. As this may prove difficult, investing in training opinion editors to be better judges can help fill in the gaps (trainings are offered by the National Association of Science Writers).

Second, creating a standard rubric for opinion editors to help assess a given “expert” op-ed would help — as a scientific peer reviewer, I’ve often followed these, which could be adapted for pandemic-focused op-eds. Included in such a rubric would be a variation of a “clear and present danger test”— applicable to potentially hateful views as much as those that could pose a public health risk. Third, newsrooms should regularly publish and make available, explainer guides to help educate readers on scientific media literacy. Fourth, where clarifications or corrections (or even a revision of a prior opinion) are offered by the writer, as with the Oster example, editors could publish this as an update to the article itself, though in much of these instances resorting instead to a newsletter may be better.

Fifth, whether it’s opinion or traditional journalism, caution should be heeded on any article that offers a crystal ball — whether around herd immunity, planning for social events next season, or when/how the pandemic will end.

At a time when readers are looking to news outlets for certainty, the temptation by newsrooms to provide this is strong. We don’t know how this pandemic will end, and no “expert” or conscientious science journalist, albeit well-meaning, knows either. Certainty remains elusive, and the most accurate pandemic forecasts are made a bit like the weather: a week or two at a time, a diminishing return on this accuracy the further out we go. The news media must continue to normalize this, as well as normalize that the understanding of SARS-CoV-2, as with all science, will evolve, so the recommendations and messaging will too (which doesn’t equal flip-flopping). Reporting that helps place the pandemic’s trajectory in context, and guide readers’ thinking will continue to prove extremely useful.

For readers who are turning to these pages for hope, but also prudent expert guidance, a healthy acceptance of the uncertainty that all of us — expert or not — are grappling with, as well as the limits of forecasting, will help undo some of the pressure many editors face to meet that need in their outlets. And of course, subscribe and support these outlets.

The original title of this essay was “What Silence Springs” (not very SEO friendly!) which is a play on words of Carson’s book title. That was intentional, to underscore a crucial last point. I’d be remiss to omit the fact that oftentimes the most knowledgeable and experienced people lack the platform to lend their expertise, or are implicitly (or explicitly) silenced, which is fertile ground for overconfident voices to take the lead. As with other professions, the journalism world struggles with a bias towards a certain “kind” of journalist or expert; my volunteer work mentoring several academics through The OpEd Project only further cemented that meritocracy remains an ideal. When it comes to opinion journalism, it’s on editors to ensure that it isn’t just the loudest often self-proclaiming experts who are provided with a platform for their views and ideas, but those with demonstrated expertise, humility, and thoughtfulness, as they often add immeasurable value to the public conversation — perhaps, especially, those voices that remain underrepresented primarily because they are excluded.

An outsider, but one who held herself to the same standards of scientific evidence as her more decorated academic contemporaries, Carson demonstrated that the evidence-based opinions of a nonexpert can indeed shift the public’s perception of the most pressing issues of our time.

She once proclaimed: “Wonder and humility are wholesome emotions, and they do not exist side by side with a lust for destruction.” Though Carson was referring to how humans experience our natural world, the same might be applied to opinion journalism. A reader’s sense of wonder is rooted in noticing how differently another might understand crucial issues; we are often humbled if that perspective is novel enough to change our minds. We also value that which is rare, which is why we pay attention to contrarian views.

But this wonder and humility, in its truest sense, cannot be derived from arguments that are ultimately destructive by virtue of being unsupported by the evidence.

During a pandemic which has now surpassed the death count of 1918, and where millions of citizens and their leaders base (or justify) their actions on what they read in newspapers they trust, it’s simply a pattern we cannot afford to repeat.

**Originally published in Elemental, and subsequently (slightly different version) in Poynter**

Can Prayer Heal?

Does spirituality play a role in health outcomes?

Credit: RawPixel

On the last day of January, my Twitter feed lit up with a curious and heartfelt call: “Please. Please. Please. Everyone PRAY for my daughter Molly. She has been in an accident and suffered a brain trauma. She’s unconscious in the ICU. Please RT and PRAY.”

The tweet came from a woman named Kaye, a lawyer and mother of three in Los Angeles. Her daughter Molly was in a pediatric intensive care unit after suffering a brain injury. I, along with thousands of others, heeded her call, sharing a private prayer that Molly would recover. Soon Kaye began tweeting live as to Molly’s status — she regressed with brain swelling, needing surgical intervention. She was then stable for another day before her blood pressure and the pressure in her brain (intracranial pressure) fluctuated, needing another brain scan and another surgery to reduce the intracranial pressure.

By sharing what was happening for Molly, Kaye brought thousands of us into that small ICU room over several days, highlighting the hard work and efforts by Molly’s doctors and requesting that followers (the number amassed to more than 60,000 within the span of just a few days) do one thing: pray.

The research on intercessory prayer—the formal name for praying to a higher being or force, for ourselves or for others—paints a conflicting picture. In 2020, a published case report caught my eye: A patient’s blindness “resolved” after the patient received intercessory prayer. But the case happened in 1972; surely the details may have become muddled in the retelling over several decades. The same researchers reported on other cases, like prayer for gastroparesis (when the stomach becomes unable to function) in a 16-year-old. Other research suggests prayer may be helpful as an adjunct for pain management among patients who might describe themselves as religious.

In 2006, researchers from the Mind-Body Medical Institute at Harvard Medical School reported on the Study of the Therapeutic Effects of Intercessory Prayer (STEP). This trial involved cardiac bypass patients across six hospitals in the United States. Each participant was in one of three groups: One-third received prayer from others after not being told if they would or not, another third didn’t receive prayer after being told they may or may not receive it, and the last third were told they would receive prayer. In the end there was no significant difference in death rates (mortality) between the groups.

Perhaps most prominently, a Cochrane review from 2009 that reviewed 10 studies and more than 7,500 participants compared intercessory prayer plus standard care with standard care alone and found that the results were equivocal — in other words, prayer didn’t make a difference to the patient’s outcome. That review was then criticized as failing to “live up to the high standards required of Cochrane reviews,” and other researchers have criticized the study more generally.

Yet, spirituality may effectively be a way to create meaning out of the experience. It can also help patients create meaning from their experiences.

Jonah Geffen, a 44-year-old rabbi in Manhattan, echoed some of these same sentiments. His path into spiritual work involved a stint at law school, after earning a master’s in conflict analysis and resolution. Now he works primarily in the community but on occasion gets called into hospitals or people’s homes specifically for healing purposes.

“[As a] rabbi… generally, no matter where you are, what you’re doing, there’s always an element of care involved in it… very often someone looking to heal something,” Geffen told me.

Over the years, Geffen has become prepared to run to someone’s side in the hospital or at home when crisis hits. He adds that the biggest challenge he sees, among those who are chaplains in hospitals, is that much of the time they might be asked to pray for someone outside their faith.

“It’s a challenge with some of the rabbis I know who might be asked to pray for someone. In our tradition, prayers are quite scripted, so the challenge is for them to step out of that and find another way to connect with that person and to God,” he says.

Christina Puchalski, MD, a physician based in Washington, D.C., became interested in spirituality at an early age. “There wasn’t one specific thing that got me interested in orienting myself towards the spiritual needs of my patients. I suppose it was years of knowing my connection to the sacred and that so much of the suffering we see in our patients is of the spiritual kind,” Puchalski told me.

In 1996, Puchalski developed the FICA (faith/belief/meaning; importance/influence; community; address/action of care) spiritual assessment tool for health professionals to help them integrate spiritual views into a patient’s clinical history. Puchalski has worked with everyone from the Vatican to the World Health Organization (WHO). With the WHO, she has advocated to include “spirit” within the definition of health, specifically in the realm of palliative care.

Currently, Puchalski leads the George Washington Institute for Spirituality and Health, dubbed GWish. Established in 2001, the institute has the primary role of raising awareness about the spiritual aspect of patient well-being. It’s the biggest center of its kind in the United States.

In her book Making Health Care Whole, Puchalski defines spirituality as “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.” She goes on to emphasize that spirituality helps us find meaning and purpose “even in the midst of failed jobs, relationships, accomplishments, and unattained successes, especially at the end of life… The inability to find meaning and purpose can lead to depression and anxiety.”

According to Puchalski, the triggers for potential spiritual growth can include serious illness, aging, loss of a loved one, stress, life change, social events, and tragedies.

So perhaps what Geffen and Puchalski are both alluding to is that asking whether prayer “works”—as in whether it hastens recovery—is not the right question, even if it’s important from a research and evidence-based point of view. Instead, perhaps it’s important to define the outcome more holistically: as a measure of healing for both the patient and their family, one that transcends merely “curing” or “recovery.” As well, perhaps the word “prayer” is unnecessarily constraining. We could instead reframe it as “compassionate and caring presence” for another person, where we genuinely hold their well-being in our thoughts.

On February 15, Kaye shared an update that Molly had passed away and that her family was grateful that the request for prayer, regardless of one’s faith, was heard and met many times over in the form of an outpouring of compassion from a community of friends and strangers. She said it brought comfort and a sense of being witnessed during the family’s time of immense need. Perhaps this same sort of compassionate presence has the potential to heal and assist those suffering with an unimaginable reality and subsequent uncertainty, even if, in the end, we’re met with the limits medicine itself places on the ability to cure.

**Originally published in Elemental, March 2021**

We Must Rethink the Role of Medical Expert Witnesses

The Derek Chauvin trial highlighted a potential way physicians could better serve the criminal justice system

Credit: Getty Images

In the aftermath of the guilty verdict in the trial of Minnesota police officer Derek Chauvin for the murder of George Floyd, a consistent element of many criminal trials came into sharp focus: the role of medical expert witnesses, and the influence they wield in the courtroom, particularly as it relates to determining the cause of death. Within the span of the ensuing weeks, one juror said that the medical expert testimony was particularly influential, and a petition to investigate another medical expert witness’s track record of assessing cases for potential bias, garnered over 400 signatures from concerned physicians. Clearly, it’s worth asking this question: If the broader goal is to improve justice, can the system of using medical expert witnesses be re-imagined? This question can be examined by highlighting three main challenges.

First, the term “expert” is tricky in medicine, as medical science evolves rapidly (COVID is a prime example). Yesterday’s expert could be out of touch with their field of expertise today. Further, the prosecution and defense choose the expert most appropriate for supporting their respective legal strategies, which runs the risk of confirmation bias. At its best, medicine is a group sport; in hospitals, particularly for challenging cases, physicians share their knowledge; debate and discuss a case; and formulate plans in consultation with each other. And when it comes to the determination of death, the standard for group involvement is often higher. For brain death, for instance, two different physicians’ assessments may improve the likelihood of an accurate assessment.

The second issue is that the standard used by the courts to assess whether an expert witness’s scientific testimony can be included differs by state. Several states (including Minnesota) use the Frye Rule, established in 1923, which asks whether the expert’s assessment is generally accepted by the scientific community that specializes in this narrow field of expertise. Federally, and in several other states, the Daubert Standard of 1993 is used, which dictates the expert show their scientific reasoning (so the determination of validity is left to the courts), though acceptance within the scientific community is still a factor. Each standard has its drawbacks. For instance, in Frye, the expert’s community could be narrowly drawn by the legal team in a way that helps bolster the expert’s outdated or rare perspective, and the Daubert standard presumes that the judge and jury have an understanding of the science in order to independently assess scientific validity. Some states also strictly apply the standard, whereas others are more flexible. (The Canadian approach is derived from the case R v. Mohan, which states the expert be qualified and their testimony be relevant, but the test for “reliability” is left to the courts).

Third, when it comes to assessments of cause of death specifically, understanding the distinction between necessary and sufficient is important. Juries can have a hard time teasing out the difference. In the Chauvin trial, the medical expert witnesses testifying on behalf of the prosecution were aligned in their assessment of what killed Floyd: the sustained pressure of the officer’s knee on Floyd’s neck (note that asphyxia is a common cause of cardiac arrest). However, David Fowler, the medical expert witness for the defense, suggested the asphyxia was secondary to heart disease and drug intoxication as meaningful contributors to his death.

An example of a cause being sufficient on its own might be a person who is pushed out of a plane, at 10,000 feet without a parachute. In a case like that, having a preexisting condition is inconsequential to their certain death. An example of a cause being necessary but not sufficient might be an individual with a compromised immune system who is infected with the influenza virus; neither condition alone would typically be lethal, but the combination might well be. With the Chauvin case, the disagreement between the medical expert witnesses was effectively over whether the force used was sufficient to cause Floyd’s death, irrespective of preexisting conditions (akin to the example of being dropped out of a plane) or whether it was only deadly in combination with another condition such as trace amounts of drugs (i.e., more similar to a person with preexisting conditions dying from influenza).

If we had the opportunity to re-imagine how medical expert witnesses might be used more effectively, how would we approach it?

In a 2010 Canadian paper, two scholars made several recommendations, including that these experts share only opinions (based on facts and reasoning, ideally supported by the medical literature) from their area of expertise, make clear where elements may be controversial in the scientific community, avoid confusing jargon during their testimony, and be informed that their primary role is to assist the court by providing testimony that is impartial, as in free from bias.

Arguments to improve how medical expert witnesses serve the justice system have been made by prominent legal scholars such as David Faigman, the Chancellor and Dean and John F Digardi Distinguished Professor of Law at the University of California Hastings School of Law. However, Faigman shared that it remains a challenge to convince the courts to re-imagine this system.

One potential improvement involves vetting medical expert witnesses for potential biases, such as those based on gender or race before they take the stand (Fowler, the medical expert on Chauvin’s defense team, was involved in another similar case, involving the death of a young Black man, which raised concerns, which is leading to a review of his other cases after an open letter signed by over 400 physicians). According to Faigman, currently only good cross-examination may help elucidate these biases during a trial. As well, biases related to compensation could potentially be avoided by instituting a common pool of funding, with a standard rate, though in practice, this would be challenging to put in place.

Another improvement could involve ensuring that courts institute a more stringent application and selection process, in which medical expert witnesses would be required to demonstrate their clinical and research competence related to the specific issues in a case, and where their abilities are recognized by their professional group. For example, the American College of Cardiology could endorse a cardiologist as a leader in a relevant subspecialty—a similar approach has been suggested as a way to reform medical expert witness testimony by emergency physicians. One drawback, according to Faigman, is that courts would be unlikely to fully abdicate their role in evaluating expertise.

Last, instead of medical experts working for both sides, the courts could appoint a panel of medical experts who are required to explain their assessments (which would be part of the record) independently of each other and the opposing legal teams, but also have the panel work together and deliberate on a final assessment. Faigman shared that while this would offer an ideal solution, the courts would still need to decide how best to appoint and compensate this panel.

In any case, borrowing from how medicine works at its best in hospitals, to improve the current model in court may help us better reach our common goal of justice.

Since the time of Chiron, doctors have been viewed as godlike. More recently, and particularly during the pandemic, we realize that physicians have limits to their knowledge. Perhaps no other physician described the fallibility of doctors more profoundly than Roger I. Lee, who served as the president of the American Medical Association. In an essay aptly titled “Are Doctors People?” published in the New England Journal of Medicine in 1944, he wrote:

“We must accept the fact that the community, from the days of folklore and the

medicine man to the present, conceives the medicine man and the doctor as someone apart

from the rest of the tribe or the rest of the community…[but] Doctors are human beings.”

Lee was ahead of his time in his recognition that doctors also have a role to play in ameliorating social ills. Systemic racism is perhaps the most profound of these ills. The Chauvin trial has only furthered the salience and limits of physician expertise and judgement in the criminal justice system. While the verdict was ultimately aligned with the majority of medical expert witnesses, and those physicians who assessed Floyd at the time, it’s on us to make the system better.

**Originally published in Scientific American, May 2021**

Well-Tech Series: Melody Mortazavi & Trishla Jain

A series of interviews with pioneers bringing the world of wellness and technology to make meaningful change.

 

From her work on the initial Sephora team to her experiences in manufacturing, consulting, and brand strategy for companies like Gap Inc., Cisco, and Landor, Melody Mortazavi has been passionate about creating brands her entire career. Mortazavi is an entrepreneur who believes in the power of connection, and she founded UME in Menlo Park with that vision in mind. After UME was acquired, Mortazavi continued to pursue her love of brands and human connection by co-founding Longwalks with Trishla Jain.

Trishla Jain is an author, artist, and entrepreneur. Throughout her career, Trishla’s work has focused on helping people communicate and connect mindfully. She is an author of a mindful children’s book series and an accomplished artist with exhibitions exploring the intersection of joy, gratitude, and minimalism. Trishla sought to build a better way to spark meaningful conversations and deepen personal relationships online, co-founding Longwalks with Melody Mortazavi.

 

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Amitha: So I downloaded Longwalks back in December, and I can’t remember where I had first heard about it – it might have been through Oprah magazine or a tweet she posted? It’s so well designed, and I love the concept. What got you motivated to create it? And what spurred the interest in well-being and self-care?

Melody: I think that we approached this in a very personal way to start with. We (Trishla and I) met quite serendipitously, and she had invited me to a conversation, sort of a Jeffersonian type dinner, at her home, where she had crafted a really beautiful conversation for the evening. The conversation was designed to bring 10 women together who had never met before in the most optimal way possible. And yes, that's very “Silicon Valley,” but like everywhere else in the world we're all quite pressed for time and so she wanted to create the perfect environment for us to really get to know each other. And that meant getting to know each other outside of what we do or what our significant others do or where our children go to school, which are the typical things you generally hear from each other when you first get to know someone. There was a question that was posed about a poem that grounded the conversation, and each person just shared, one at a time, as we went around the table, about a story that that poem reminded them of. It was a very new way to have a conversation because you actually got to sit there and really listen to what the other person was saying. And then when it was your turn, you could speak essentially your truth. And so, this form of uninterrupted one-direction type of sharing was really beautiful. It was really transformative for me, and I had never been in a conversation with someone else or a group of people where I didn't actually have to work very hard to keep the conversation going. And this was just a really beautiful way of connecting with other people at the table, and after the third or fourth time we had done this, I started thinking about the ways people are connecting with each other now digitally. So we started thinking about how to deliver this same sort of experience to others. I think, when social media was designed and developed, people didn't really think about the negative impact on mental health. They didn't think about the impact on people's relationships or attention spans, and all the things that you very well know. So we embarked on this very ambitious mission of creating a truly supportive and kind social platform where people can share their stories in a way that I was alluding to, to really tell the things about themselves that really matter to them and make up who they are: like the really the good juicy stuff of who you are. And so I think what we did really beautifully was really utilize psychology, Eastern philosophy and a lot of really mindful meditation practices to create a platform that not only provides the content that's that really helps people connect, but also create this really beautiful safe space which we hear about time and time again.

Trishla: I mean your question was really why we started Longwalks, and in essence I think the quality of our human relationships, the depth and intimacy of them is one of the primary indicators of lifelong long-lasting happiness and kind of what the Harvard Study of Adult Development says.
When you look back, a fulfilled life is one with beautiful deep relationships. So that's really kind of the vector where we wanted to focus. It all came together in this beautiful way. And the way Longwalks is really different is that in some sense it's not open-ended, unlike every other social platform where you can kind of share whatever it is you want to share, using various formats. We've really created a little bit of a cocoon around the user using our prompt. So, we provide one single piece of content, which is a fill-in-the blank question every day. And that's it. It's very simple. It's very equalizing pretty much being a human. I've had a lot families say that they do it with their kids. They do it on their phone with adults and then at night they use it at the dinner table, and they make all their little kids like six year old, seven year old, kids fill it out. So it’s kind of just like a moment where you get to share something and then we anchor we map out the whole year. In 365 days we kind of cover a large aspect of what the human experience. And it's beautiful because you don't really have to think about what you're sharing and get yet if you're doing this with people on the platform. You get to experience humanity and living together.

I think that I've been practicing this formula of sort of asking a question and then making everyone answer it in the fill-in-the-blank model for a very long time, since high school, so it's just kind of my modus operandi. This was the first time I had kind of done this in Silicon Valley and Melody happened to be there, and then with serendipity, one thing led to the other and in 2017 Melody started to think of this as like a full-fledged business rather than just a private kind of experience with friends, but by then we must have had over, 250 of such dinners like that. And the digital format kind of coincided with COVID, even though it started way before COVID it just, there's so there's a lot of serendipity in our journey.

Melody: What matters is that the question has to be supportive enough for people to want to access that as a nugget to share it with somebody else, so 2017 was a year of focus grouping, really, essentially, and then figuring out how we want to how we want to deliver this what it would look like, as a feeling to bottle up. I think one of the beautiful parts of the digital platform is that you can have that feeling with someone, all the way across the world, who has like a completely different socio economic background is of a different race and gender and every everything is different about them, but you can actually have that exchange of that feeling with that person. And that's what's happened to me a lot -- I've randomly met probably 20 or 30 people who are now my friends on Longwalks, that I share with, and I don't even know where they live!

Amitha: That's amazing. I was just talking to someone about on most apps or social media there aren’t really incentives to be civil. And I’ve likened it to a dinner party, where if you aren’t civil, even if you have opposing views, you won’t get invited again. But there’s this feeling where it's almost invigorating when you have a really interesting discussion or debate, or you know that feeling of being connected. So you're, totally right – it’s super hard to get that online with a lot of the apps that are out there right now that are being used.

Trishla: I read that you're also Yogi and you love yoga. And I think with Longwalks it’s that synchronicity that sometimes gets missed. Like when you're in a yoga class, the entire class is participating in a series of motions, everybody's on the same page and moving together. And that creates a very harmonious flow. It's not like everybody's doing their own thing. One of the most unique things about our platform is that everybody's doing the same ‘pose’ as in answering the same prompt. So you feel you're not alone, like you're just all different rays of the same sun.

Amitha: I love that analogy. So the actual digital element was that rolled out in 2020 then you're saying just around the pandemic?

Melody: The first version of the app was launched in August of 2018. We had been working towards a solution for a couple years before the pandemic hit.. What we've done really mindfully is that we are building this app for our users, and we have a big cohort of users who really love this app. And so we build and we iterate based on their needs, that you know of course are aligned with, with the mission. So we have taken quite a few updates and changes to the app in order to best align with our with our users, and when COVID happened and we all went into lockdown in March, had just launched our best MVP (minimum viable product) to date. And so we saw this really beautiful alignment of user with product. And that's when we had a significant uptake in users, and we have really great App Store reviews that are all organic and just people's real experiences. So, the alignment was really great, during a time where it was so uncertain for everybody. We were providing a tool that was helping people feel better. That was helping people feel connected to each other not as far apart, was giving them something to anchor their daily practices so that they could answer something with the people in their lives. And it was really helping them stay close to the people they couldn't be close to. And so that really gave us a whole big lift in order to kind of keep going and keep building and keep doing what we're doing

Amitha: Why the name Longwalks?

Trishla: Many reasons. Some of them are practical, you know, in the sense of wanting to have a name that's unique and all of that, but really Melody and I are just nature lovers who love to walk and we think of human relationships as kind of like walking hand in hand. And we think that sometimes the best conversations you can have is when you're on a long walk with a friend. Because the conversation just organically flows, and you're enjoying the earth, so there's many different kind of connotations. I don't know -- Melody what does the name mean exactly?

Melody: I will just embellish a little bit more in that I think that the experience we try to mimic on Longwalks, is really that kind of those special moments that you have during a long walk, you know those really those heartfelt conversations that you really get to know people that's essentially I think what we hope toreplicate.

Amitha: How do you feel like, like how is the uptake been so you obviously launched in 2018, you were saying, um, have you seen an uptake. I mean, as I mentioned, I've heard about it. I think through either Oprah Magazine or something, some something over related.

Melody: She gave us a shout out! Oprah’s a gifted conversationalist and gifted person at making anybody feel important and worth listening to. And I think we've always just reached out to her along the way when we've needed guidance or calibration or just talking to someone whose life's work has been about helping people connect meaningfully.The shout out was definitely a big surprise to us- we had no idea it was coming. And I think I was on a long walk at the time because I hike a lot on the weekends, and our biggest concern was ‘oh my God are the server's gonna crash?’ Luckily they didn't and our tech team, they're all just incredible. So, it was a great shout out from her that kind of validated the experience that all the users were having. They were really grateful for Longwalks during a time where there wasn't a lot to be grateful for.

Amitha: Definitely. So have you found during this pandemic that uptake has increased like? Because apps are tough in terms of getting people to stay on them. But I think that what you're offering is unique, so I would hope that there's more people are more incentivized to like stick to it.

Melody: I mean I think that's where we started the conversation is ‘How do you have social wellness’ and ‘what does that even look like’ as in having a healthy relationship with this phone and the things we do on it. And I think that one thing we try to do as we definitely don't hold ourselves accountable to the same vanity metrics that other social companies, hold themselves accountable to. So for us time spent on app is measured a little bit differently for us, because it's important to have a depth of relationship. We don't make it about Facebook likes or friend counts or friends lists and things like that because it's just, it's a different platform it's a more niche platform and I think our goal is to empower the depth of relationships and authentic connections, and helping people find like-minded people on Longwalks. When we are looking at acquiring users we unfortunately have to use the same mediums that other people use, and do your standard performance marketing things but the way I sleep at night is to think that I am leveraging these other social media platforms to bring people to Longwalks. It’s a healthier and better way to communicate with the people that they want to communicate with.We don't expect to take over. So the time that you spend on Instagram or Facebook we just hope to kind of counterbalance it with things that fill your bucket and make you feel really good about the people that you're talking to.

Amitha: I'm sure you both watch The Social Dilemma. I'm sure it's not a surprise, in terms of what they presented, but do you have any thoughts on sort of how Longwalks fits in? I guess you've sort of answered that question as it being a buffer or counterbalance?

Trishla: Tristan is one of the early attendees to dinners. And at the end of the dinner he shared a very profound experience about his mother and said ‘I challenge you to bring this to tech as I've never seen it.’ And at the end of The Social Dilemma they pose a question, you know, as in ‘what is the solution?’ They don't offer solutions. So we really feel like Longwalks is very sustainable, because it only takes a few minutes maybe 5-10 minutes a day. It's a very sustainable solution to create social wellness in your life, using your phone.

Melody: I think it's just a really actionable solution. So that's how we think of it as well, in relation to The Social Dilemma, and Longwalks is literally designed as an antithesis to all of the problems of social media. So, it's designed to not feel like a popularity contest -- we don't display any kind of counts. We don't publicly display how many people have liked your post. We don't let you know how many friends people have or any kind of numerical things like that. The way that our commenting works is that it's pre-scripted to be extremely supportive and kind. So it really eliminates that culture of bullying or negative commenting that occurs in other platforms. It's very unified like I said and has synchronicity because everybody's on the same page and answering the same questions. You don't get a lot of distortion or distraction there's no ads. There, nobody's trying to sell you anything. So a lot of the problems associated with social media just don't happen on our Longwalks: we've created a situation where they won't happen. But we always have our eyes open, just to see if things are creeping into that territory.

Amitha: Do you feel you're also sort of self-selecting as well for people that are not going to be that way maybe?

Trishla: We have the very committed and sticky users who use both regular social media and Longwalks, and then there are of course the people who doing a detox off other social media, so only doing Longwalks. So we find that it works really for anyone who wants to have a kind of new social wellness habit in their day.

Amitha: Got it. And then so you were mentioning I mean it sounds like when you, when you mentioned like Tristan Harris, for example, it sounds like you're pretty plugged into the Silicon Valley community so I'm curious to know like what your, what both of your backgrounds are in in tech, like a different form of tech before you could work for, you know, big tech before this like without a motivator. Tell me a little bit about that.

Melody: I actually come from a retail background and brand strategy background but during the latest part of my career I worked for Cisco and I did Internet Business Solutions consulting so I do come from a slight tech background but my specialty is really optimizing retail solutions for consumers. And then after I got pregnant with my first child I didn't want to consult anymore. I was not going to get on a plane every week, and so I decided I came up with this idea for a children's play space, and this was at the time where there were no other really placed bases around, so we raised a seed round and opened a 15,000 square foot children's indoor play space in Menlo Park called U-Me, so that I could work, and do something with my brain but also bring my kids to work. And so I did that for about seven or eight years and then that was acquired. Then I decided to go back into the corporate world.

Amitha: I'm just trying to imagine what it would look like in Silicon Valley like a big play space I imagine all of the, all of the activities are planned intentional and…

Trishla: Very. It was so beautiful I mean she has an unbelievable eye for design, they have this kind of minimal Scandinavian aesthetic where everything had a purpose, there wasn't any like random stuff and it was really the child was at the center of the experience and the child could direct it to play very well so, and she used a lot of that learning. I can see how she applies that user experience design in Longwalks.

Amitha: What about you Trishla?

Trishla: I grew up in India, and my family runs the Times of India group. So I kind of grew up
enmeshed in those walls. And then I went to an American school and then I came to the U.S. for college (Stanford) during college and fell in love with English literature, so I had a circuitous path where [I then attended Columbia University to do graduate work in education then] worked in brand marketing in New York. And after that, I went back to India and just worked at times in different capacities, learning about print. And then also learning a lot about how to embark into the digital world. I did that, and then I became a full-time artist, which is kind of my deeper love, where I had three solo exhibitions in India while having children.

Amitha: What sort of art?

Trishla: Painting. But during that time, I would say my main real job is being a full time Yogi. I did so many maybe 50 silent retreats like Vipassana. Yeah. Even a few 60-day ones where I left my husband with my parents. And I think that was just a time of profound growth intellectually, emotionally, physically and every way. And then we both moved here to America about four years ago. But we were thinking of it as coming back to Stanford, where me and my husband met. He runs the digital business of Times of India. Tristan is really more of a Stanford connection than a Silicon Valley connection.

Amitha: Got it. It sounds like you've had some really interesting experiences, both in India as well as in the US, and that blending of Eastern and Western practices in the sense?

Trishla: When you have profound meditation, it's almost like you just want to give back to the world in whatever way you can and then I found Melody.

Amitha: Yes, serendipitously! I'm such a fan of serendipity and have noticed that in my life as well. So obviously you both women of color – Melody you have Persian (Iranian) heritage, and Trishla you were born in India. How does that sort of affect or impact your experience in Silicon Valley as founders, anything that you want to share about that, like, in terms of opportunities or barriers?

Melody: So I think that if I had to talk for a moment about whenever I feel inadequate or when I feel that maybe I am not. I am not on par with the audience that I'm keeping has not necessarily been ever because I'm a woman, I think, for me it has always been a feeling that because I don't come from that so called White, tech, engineer, or a certain pedigree, I think that feels very heavy for women. I think that there's a certain level of...I think Trishla and I just don’t let it get to us, otherwise it becomes very demoralizing. So I think we do a very good job of tuning those things out and really making it about the product that we're building, and the solution where it could do with the solution we're giving to people. And because we are in a space of wellness, it makes it a little bit more comfortable, but for sure I would say it's very hard to maintain your confidence and not feel adequate being in the Valley and being women who are not from a pure tech background.

Trishla: I think one of the things my dad always taught me is that you have to turn your disadvantages into your greatest advantages. So in some ways, I like to think of it as this idea that we're fresh blood, like we never think of a solution on the product the way a veteran Facebook person or someone who spent 10 years at Google. And I think being mothers what matters is we care so much about building a future for our children. So we both have two young children, each and Melody's kids are older and she sees them already interacting with social media, and she wants to create a new alternative, kind of like a different way for her daughter to portray herself in the world. One option is for her to take a beautiful picture glowing skin and maybe comment on how sunny and beautiful it is in California on Instagram, and the other is to talk about maybe something totally different, something meaningful or something she's focusing on or, which is more Longwalks’ aim.

Melody: And people gravitate towards Longwalks generally are pretty open minded.

Amitha: One the things I’ve noticed when about individuals that are trying to make a difference in healthcare, almost all of them are described themselves as like outsiders. So people that early in life might have felt like they needed to fit in for one reason or another, because of their background or their way of thinking or whatever but over time they realize that those differences were actually an asset, and that was what sort of fueled them to think differently and make changes because as you can appreciate health care and the health system which is a very antiquated system. But the people that are actually making change are the ones that can actually see the solutions because they have an outsider sort of perspective. And I think, you know, it's our perspective and I also think it's a bit of grit as well like if you're someone that's used to adapting but you're also sort of like you're maybe a little bit grittier as well. I think that that's super interesting that you both seem to identify with that as well. Was there anything that I didn't ask you that you think is really important.

Ok my last question! Because I have an epidemiology I'm always interested in research. Have you thought about looking at the data in terms of assessing how people are feeling using the app? Could it be an intervention or studied in some way in terms of short and long-term impacts on mental and emotional health? Or do you have a sense of this already?

Trishla: I would say intuitively, qualitatively, the feedback indicates a resounding yes, that people see a kind of marked uplift in their emotional states, reduction in depression, reduction in anxiety, and loneliness. However, it would be a dream come true I think for Melody and I to have that documented in a way that's actually scientific with rigor.

Melody: We're looking at a way actually to incorporate these questions into the user journey to get a sense of how it has impacted them and the main reason we wanted to do that was just so we can make sure that we are staying true to their needs and really able to satisfy kind of those things so we are looking into it right now. I think given the pandemic and everything that's happening, I just feel a little uneasy asking users to fill in those questions. But definitely I think going down the line, it’s something we will be doing.

The Unbearable Stillness of COVID Grief

The Unbearable Stillness of COVID Grief

The coronavirus pandemic will leave lasting emotional scars.

According to my mother, there are two unique forms of grief that everyone touched by war understands. There’s the grief associated with the loss of human life—through bombings and brutal combat, and through the disease that runs rampant when health care and all other social services are halted. Then there’s the grief associated with the loss of a life as we once knew it: loss of country, loss of employment, loss of identity as a “prewar person,” and the subsequent need to start over. The two run along together like two dark snakes intertwined.

When my mother and father moved to the United Kingdom from Sri Lanka, amid a civil war that would drag on for 26 years, they didn’t readily display their grief. My siblings were born into the only reality we would ever know: visiting ducks at the local park, swinging on our neighbors’ swing set, and blowing out candles at birthday parties that were evidence of both assimilation and normalcy. Yet my parents’ grief would peek through at moments. The first time I ever saw my mother sob was the day she received a phone call with news that my uncle back home had lost his foot in a land-mine explosion. Years after we had moved to Canada, she learned that a famous library holding thousands of historical texts in her native Jaffna had been burned to the ground by the army. Her silent tears and the way she stared off into space, I realized then, were two more dialects of grief.

That kind of sorrow is unfamiliar to many people who live in peaceful places. Yet COVID-19 will leave behind a complicated form of grief that will linger—potentially for many years after the immediate crisis has abated. Thousands of bodies have piled up in Italy, during a period when doctors wrestled with horrific ethical quandaries around rationing care. Now, in parts of the United States, refrigerated trucks have been deployed for use as makeshift morgues. In New York, a mass grave is being built, and cremations are happening all day long. Patients are dying alone, and much like during the Ebola crisis in West Africa, fears of contagion have interfered with families’ ability to mourn.

As of yesterday afternoon, more than 20,000 Americans had died of the new coronavirus. The growth in the number of cases, fortunately, appears to be slowing. Still, even relatively optimistic projections indicate that many more people will succumb in coming weeks; even some who recover will still be at risk of long-term health complications.

All of this damage is occurring while people are still dying from other causes, too—and when grieving people are being discouraged from even going outside, much less seeking solace from their loved ones. Making matters worse, the current crisis has put enormous stress on the healing professions that, in normal times, help families deal with loss and bereavement. Our society is ill-prepared for the kind of grief the coronavirus is visiting upon so many people during so short a span.

Research on grief after large-scale casualties is scant, but the literature suggests that suffering personal losses can be particularly harmful when experienced in times of broader social stress. A 2015 study found that children who lost a loved one during a mass-trauma event such as a natural disaster, a terrorist attack, or a war are likely to suffer long-term psychological trouble. Studies of service members and veterans who served during 9/11 found a high prevalence of what is sometimes called complicated grief—a type of bereavement that is unusually severe and long-lasting. These service members and veterans showed worse symptoms of post-traumatic stress disorder and had a higher number of lifetime suicide attempts.

A study of survivors of the Rwandan genocide found that what the researcher called “unprocessed mourning”—in part the result of the halting of traditional mourning rituals during the war—contributed to lingering mental-health woes. Two years after the 2004 Indian Ocean tsunami, chronic grief was found in almost half the survivors, and was strongly associated with losing a spouse or being female. And a systematic review of Ebola survivors found high levels of psychological distress, including prolonged grief, which was compounded by the stigma placed both on survivors and their families as they attempted to return to work.

The coronavirus pandemic differs from those catastrophes in various ways. But it brings stressors of its own. Especially for those worried about vulnerable elders, it brings a level of anticipatory grief, the form that appears when the death of a loved one appears inevitable. It also comes amid a sudden economic crisis and skyrocketing unemployment; the disconnection of people from their families, friends, and their usual routines; and the recognition that some of those routines will be permanently disrupted.

In her 1939 short story Pale Horse, Pale Rider, the writer Katherine Anne Porter describes the protagonist, Miranda, as she falls in love with a soldier named Adam while also falling ill with the 1918 influenza. Amid their fear of the disease, the pair also grieve their old way of life. “All the theatres and nearly all the shops and restaurants are closed,” Adam laments, “and the streets have been full of funerals all day and ambulances all night.” Only when Miranda recovers herself can she fully appreciate the world she and her lover have lost. And when she learns, by letter, that her lover has died from the disease, she descends into the darker depths of prolonged grief.

“At once he was there beside her, invisible but urgently present, a ghost more alive than she was, the last intolerable cheat of her heart; for knowing it was false she still clung to the lie, the unpardonable lie of her bitter desire.”

The Diagnostic and Statistical Manual of Mental Disorders defines prolonged grief disorder as grief symptoms persisting for six months or longer after a loss, along with separation distress, impaired social or occupational functioning, and the presence of symptoms such as confusion, shock, bitterness, and difficulty moving forward with life. As the public sits in anxiety and in isolation, policy makers seeking to cope with the current crisis must also begin to plan for the demands on mental-health services, specifically for grief and bereavement, in the near term and beyond.

As a physician who is also the child of two physicians, I worry in particular about the grief experienced by the health-care providers who are making good on their ethical duty to serve those suffering from the coronavirus. After the 2004 tsunami, prolonged grief disorder was found in one in 10 hospital workers surveyed. In the current crisis, medical providers—including my mother, an anesthesiologist who performs intubations—are at personal risk. Even those who survive COVID-19 or do not contract it in the first place may lose valued friends and colleagues, amid the deaths of other health-care workers who have had to work without adequate protective gear.

In the hospital, doctors and patients alike have reasons to grieve. Doctors grieve the loss of a patient who has died. Patients, once a disease is diagnosed, grieve the loss of their health. Medical trainees grieve their former idealistic self as they become inured to a system that, ironically, often places little value on their own well-being.

Before the coronavirus, the ethos of humanism—of listening closely to patients’ concerns and fears and tending to their needs—had never been stronger in the medical profession. The pandemic returns doctors to a time when compartmentalizing a patient’s suffering—and one’s own—is an emotional survival tool. “We’re asked to be as dispassionate as the disease itself,” Daniel Lakoff, an emergency-room doctor in New York City, recently told me. “We don’t touch the patient in many cases, we use telemedicine, we give oxygen, and we watch and wait. And we often feel powerless.”

Claire Bidwell Smith, a counselor in Charleston, South Carolina, who has written three books on grief, told me that these recent weeks have been the busiest of her decade-long career. (She offers her services online.) She raises the possibility that grief may play out differently during this pandemic from how most people typically experience it. Usually grief feels very personal, Smith says, because the rest of the world proceeds normally while the bereaved feels numb and alone. That dynamic may change because much of the world has now ground to a halt. Grief may be delayed, she said, but a shared catharsis may lie ahead. “I think there will be a massive collective mourning when we’ve emerged from this, for us as a culture,” Smith said. “While what’s happening is heartbreaking, and we haven’t been able to ritualize or memorialize. We will come back to this.”

When I was growing up, another way in which grief visited our home was when my parents’ friends and extended family from Sri Lanka would stop by and reminisce. They would briefly recall the war but also use it as a frame in which to tell more uplifting stories of laughter and overcoming. Grief, when these adults experienced it together, became a connecting agent, joining the broken pieces into a more harmonious common mosaic.

The scars always remain. At the end of Pale Horse, Pale Rider, months of hardship give way to a future that is both brighter and tinged with melancholy. “No more war, no more plague,” she writes, “only the dazed silence that follows the ceasing of the heavy guns; noiseless houses with the shades drawn, empty streets, the dead cold light of tomorrow. Now there would be time for everything.”

**Originally published in The Atlantic**

Us, Interrupted: What Sophia Bush Is Learning About Self-Care Right Now

Us, Interrupted: What Sophia Bush Is Learning About Self-Care Right Now

Us, Interrupted is a series that focuses on public figures as well as professionals on the front lines of the COVID-19 global pandemic. During this unprecedented crisis, we hope these stories of vulnerability and resilience will help us move forward, stronger together.

Sophia Bush is an American actress, activist, and entrepreneur. She is a member of the Directors Guild of America and has starred in various independent projects, shows, and movies such as John Tucker Must Die, Incredibles 2, One Tree Hill, Dick Wolf’s Chicago PD, and This is Us and has joined the cast of the upcoming show Love, Victor. Bush also co-founded and sits on the board for the public awareness campaign “I am a voter,” which promotes awareness of registration tools and encourages all to use their resources to participate in the voting process. Most recently, Bush launched a podcast, Work in Progress, which features frank conversations with people who inspire her about how they’ve gotten to where they are.

We spoke to Bush about how her normally busy life has been changed by the impact of COVID-19 and why she’s learning to not expect too much from herself while staying home.

1. What was your life like before we learned about COVID-19, in terms of your self-care and maintaining a sense of well-being?

I’ve always struggled with routine since on set there is no such thing. Some days I have a 4:15 a.m. call time, and some days I go to work at 6 p.m. and film until the next day at 8 a.m. So I think I’ve always been enamored with people’s routines and looked at them with total fascination. In recent years, I’ve really tried to examine how to create routine.

Read more at MindBodyGreen.