Read the Latest from the Blog!

Yes Please!

Welcome to the Blog

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.”

 

 

 

 

 

Introducing…edible art (wellness as creative curiosity)

Introducing…edible art (wellness as creative curiosity)

Roasted artichoke with olive-pomegranate tapenade. Beurre Blanc. Pickled Radish.

Coconut flour battered haddock. Spicy mint peas. Homemade red potato ‘chips.’

Harissa–backed mackerel. Roasted persimmon. Golden beet labneh.

Zaatar seared mackerel. Egg-free gribiche. Guajillo chilli oil.

Butter seared scallop on roasted lotus root. Coconut milk romesco sauce. Poached bamboo shoot/roasted golden beet/radicchio salad.

Sage and shio koji Enoki with kiwi kimchi.

Arctic char mi cuit. Yuzukosho. Karashi green beans. Yellow summer squash.

Mafalde ai funghi (morel & black trumpet). Black garlic. Wild asparagus.

Roasted eggplant with shiso, coriander. Enoki-fig confit.

Poached Nashi pear with maple syrup and feta. Farro/mushroom/roasted chickpea stuffed harissa grape leaves. Chickpea aioli. Fried pumpkin flowers.

Turkey sous vide. Sumac. Umeboshi. Celeriac mash. Sangack-pomegranate-date stuffing. Patti cake roasted squash. Wild mushroom gravy.

Mango butter poached lobster tail. Pea-green chilli relish.

Fried tofu umeboshi with morel veloute. Fresh fig. Shiso. Black garlic. Candied walnut.

Tandoori prawns. Remixed cucumber raita. Papadam.

Dosa. Dishoom black dal. Sunchoke-tomato curry.

Seared cactus with hearts of palm/orange bell pepper/pumpkin flower/prickly pear salsa. Ancho.

Lavender-honey-glazed duck with persimmon and fennel. Roasted purple brussel sprouts. Black truffle pomme puree. (my adapted version of Daniel Humm’s creation).

Tuna crispy rice with yuzu avocado and lumpfish caviar. Yukari salt. Ponzu. Shiso. Served with miso bagna cauda, pickled watermelon radish, bamboo shoot.

Sesame and quinoa crusted tuna tataki with ponzu. Pickled watermelon radish. Bamboo shoot. Carrot. Fermented ginger.

Panseared half seabream with roasted marcona almond scales. Broccolini. Pickled baby radish. Purple brussel spout. Yellow carrot.

Roasted bream. Broccolini/leek/fennel/black garlic/coconut milk puree.

Morel ragu/bolognese. Squid ink tagliatelle. Crushed chilli.

Mushroom vegetarian carbonara meets spaghetti alla nerano.

Jerk fish “grounded” with fried plantain, okra, and heirloom carrots.

Jerk fish “refined” with plantain-banana purée, jerk ‘gelée’ & steamed okra.

Nasi Lemak

 

Gambas a la Clem (spot prawns with yuzu/sumac/clementine glaze, poached in ghee)

 

Roasted squash with olive pistou. Pickled kohlrabi.

 

Gambas al ajillo (spot prawns with garlic, shallot, black garlic, guaijllo chilli, parsley olive oil)

 

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**

A lucky few seem ‘resistant’ to Covid-19. Scientists want to know why

Credit: Rawpixel

 

Her husband collapsed just before reaching the top of the stairs in their small one-bedroom house in São Paulo, Brazil. Frantic, Thais Andrade grabbed the portable pulse oximeter she had purchased after hearing that a low oxygen reading could be the first sign of the novel coronavirus. Erik’s reading was hovering eight points lower than it had that morning. He also looked feverish.

“When he hit 90% [on the oximeter], I said we can’t wait anymore,” Andrade recalled. “I called an ambulance.”

At the hospital that day in June 2020, a CT scan showed multiple lesions in her husband’s lungs — an indication of severe Covid-19 infection – which was later confirmed via a blood test. Erik, 44, had likely contracted the virus up to a week earlier, from a friend who had visited their home.

He spent the next several weeks on oxygen in the ICU, a stay that was complicated by blood clots before he was discharged. But it wasn’t his sudden decline and subsequent recovery that is notable: It’s that Andrade had been sharing the same close quarters with her husband while he was infected and able to transmit the virus. She never wore a mask in the home with him. They shared the same bed. They were physically intimate. Yet when tested for an active or past infection — twice — her bloodwork came up negative.

And that wasn’t the only time she was potentially exposed. As part of her research work as a veterinary neurologist, she went to a meeting at the University of São Paulo where an infected attendee set off a chain reaction of positivity – but Andrade dodged it. Her tests were again negative.

Both experiences suggest that Andrade may have won a sort of biological lottery — that she’s one of a lucky few “resistant” to the virus that has killed more than 4 million people. But how? That’s the mystery researchers around the world have set out to unravel.

The question of viral resistance has perplexed Mayana Zatz, a University of São Paulo genetics professor, for years, beginning with exploring the clinical variability of genetic diseases in patients who carried the same pathogenic mutation. She began with neuromuscular disorders like Duchenne muscular dystrophy, and then expanded to exploring why the Zika virus caused severe brain damage in some newborns while others were healthy.

In 2018, she published a study of nine sets of twins — seven fraternal and two identical — born to Zika-infected mothers; in each pair, one twin was born with microcephaly and developmental delay while the other was spared. Zatz suspected the answer to Zika resistance lay in their genes. To test this hypothesis, she collected blood from three of the pairs and reprogrammed their cells in the lab to generate induced pluripotent stem (iPS) cells and immature brain cells called neuroprogenitor cells (NPCs) that had genomes identical to those of the resistant and non-resistant infants. Then, her team infected the NPCs with Zika and found that the virus destroyed the NPCs of only those who were not resistant — supporting the idea that resistance is genetic.

It was a serendipitous moment in early February 2020, on her daily walk, that caused Zatz to turn her interest to exploring resistance to the Covid-19 virus.

When Recovery Requires Rest

By backing away from major sports tournaments, three high profile athletes have prioritized their healing above all else

 

Credit: Rawpixel

Indeed, all three high-ranking athletes have set a precedent for professional athletes to speak up about the need to take a break as part of their healing, placing their mental and physical health above the push to perform. They also offer a chance to revisit the science of why it’s crucial to promote rest for recovery — not just for sports but for all of us.

In 2019, Michael Grandner, a sleep researcher who directors the Sleep and Health Research Program at University of Arizona, found that athletes rated as having clinically moderate to severe insomnia were at a higher concussion risk.

**Originally published in Elemental July 2021**

Changing Minds About Why Doctors Change Their Minds

After Covid, being open with patients about uncertainty may be the surest way to build trust in medicine.

IN 2001, when the pediatric allergist Gideon Lack asked a group of some 80 parents in Tel Aviv if their kids were allergic to peanuts, only two or three hands went up. Lack was puzzled. Back home in the UK, peanut allergy had fast become one of the most common allergies among children. When he compared the peanut allergy rates among Israeli children with the rate among Jewish children in the UK, the UK rate was 10 times higher. Was there something in the Israeli environment—a healthier diet, more time in the sun—preventing peanut allergies from developing?

He later realized that many Israeli kids started eating Bamba, a peanut-based snack cookie, as soon as they could handle solid foods. Could early peanut exposure explain it? The idea had never occurred to anyone because it seemed so obviously wrong. For years, pediatricians in the UK, Canada, Australia, and the United States had been telling parents to avoid giving children peanuts until after they’d turned 1, because they thought early exposure could increase the risk of developing an allergy. The American Academy of Pediatrics even included this advice in its infant feeding guidelines.

Lack and his colleagues began planning a randomized clinical trial that would take until 2015 to complete. In the study, published in The New England Journal of Medicine, some children were given peanut protein early in infancy while others waited until after the first year. Children in the first group had an 81 percent lower risk of peanut allergy by age 5. All the past guidelines, developed by expert committees, may have inadvertently contributed to a slow increase in peanut allergies.

As a doctor, I found the results unsettling. Before the findings were released, I had counseled a new parent that her baby girl should avoid allergenic foods such as peanut protein. Looking back, I couldn’t help but feel a twinge of guilt. What if she now had a peanut allergy?

The fact that medical knowledge is always shifting is a challenge for doctors and patients. It can seem as though medical knowledge comes with a disclaimer: “True … for now.”

*

MEDICAL SCHOOL PROFESSORS sometimes joke that half of what students learn will be outdated by the time they graduate. That half often applies to clinical practice guidelines (CPGs), and it has real-life consequences.

A CPG, usually drawn up by expert committees from specialized organizations, exists for almost any ailment with which a patient can be diagnosed. While the guidelines aren’t rules, they are widely referred to and can be cited in medical malpractice cases.

When medical knowledge shifts, guidelines shift. Hormone replacement therapy, for example, used to be the gold-standard treatment for menopausal women struggling with symptoms such as hot flashes and mood changes. Then, in 2013, a trial by the Women’s Health Initiative demonstrated that the therapy may have been riskier than previously thought, and many guidelines were revised.

Also, for many years, women over 40 were urged to get annual mammograms—until new data in 2009 showed that early, routine screenings were resulting in unnecessary biopsies without reducing breast cancer mortality. Regular mammograms are now suggested mainly for women over 50, every other year.

Medical reversals usually happen slowly, after multiple studies shift old recommendations. Covid-19 has accelerated them, and made them both more visible and more unsettling. Early on, even some medical professionals presented the coronavirus as no more severe than the flu, before its true severity was widely described. For a time, people were told not to bother with masks, but then they were advised to try double-masking. Some countries are extending the intervals between the first and second vaccine doses. Of course the state of the pandemic, and of our knowledge about it, has been shifting constantly. Still, throughout the past year and a half, we’ve all experienced medical whiplash.

It’s too early to say how these reversals will affect the way patients perceive the medical profession. On the one hand, seeing debate among medical experts conducted openly could give people a heightened understanding of how medical knowledge evolves. It could also inculcate a lasting skepticism. In 2018, researchers analyzed 50 years’ worth of polling data on trust in medicine. In 1966, 73 percent of Americans reported having confidence in “the leaders of the medical profession.” By 2012 that number had dropped to 34 percent—in part, the authors surmised, because of the continued lack of a universal health care system.

 

*

THE ANCIENT GREEK sea god Proteus was able to see the future, but he was forbidden from sharing his prophecies unless he was captured. This was challenging, because he was a shape-shifter: He could become a young man, a tree, a bull, a flame. No one has explored the protean nature of science more prominently than the Viennese scientist and philosopher Thomas Kuhn. In The Structure of Scientific Revolutions, published in the early 1960s, he proposed that science shape-shifts, or advances, through five sequential phases.

The first involves accepting “normal science,” the prevailing theory or “paradigm,” and conducting experiments that merely verify and reinforce the paradigm. During this phase, skepticism is often suppressed. Phase 2 involves finding an “anomaly” that doesn’t fit with the paradigm, but treating it as an outlier. In phase 3, a critical mass of threatening “anomalies” lead to a “crisis”—which prompts phase 4: “revolution,” by way of a series of new experiments to test alternative theories. Finally, a new worldview emerges, a “mature science.” The phases then repeat.

Remarkably, Kuhn didn’t argue that science is in search of “truth,” but rather that it “moves away from” an outdated, problematic, and “primitive” worldview. Also key is that what scientists and non-scientists understand in the new paradigm is reflective of what they see, as well as what they have been taught to see from experience. A switch in gestalt may be “I used to see a planet, but now I see a satellite”—referring to points in time and assuming that the initial observation may have been true. A paradigm shift, on the other hand, may word it as “I used to see a planet, but I was wrong, as it’s actually a satellite.”

Kuhn based his phases primarily on physics. What happens when we apply them to medicine and health care? When we deal with human lives and preventing illness, “advancement” can look a lot like “flip-flopping.” Is a changed recommendation an admission of harm? And where does that leave us with large public health efforts? Medical reversals place doctors in a bind. Improved medical knowledge represents progress, but honestly admitting to a past error may lead patients to see them as incompetent, breeding mistrust.

 

*

What if we got rid of reversals? That’s what University of Chicago Medical School professor Adam Cifu and oncologist Vinayak Prasad propose in Ending Medical Reversal: Improving Outcomes, Saving Lives. In many cases, they conclude, recommendations are simply issued too soon and are based on low-quality trials. Guideline committees may succumb to groupthink or feel pressured to reach a consensus where none exists. “If we look at something like peanut restriction,” Cifu told me, “the initial recommendations were mostly based on theory—good immunology theory, but theory nonetheless.” If doctors “stick with what’s evidence-based, our advice will be less likely to be overturned.”

Yet diseases don’t wait for evidence. Doctors must sometimes make medical decisions even if good data is rare or unavailable. Cifu and Prasad draw a sharp distinction between evidence- and theory-based recommendations, but in practice, doctors often adopt a looser framework. They may use lower-quality (often theory-based) recommendations until they can be replaced with higher-quality ones. Doctors combine this knowledge with their own personal experience in making clinical decisions.

Medical guidelines are similarly a composite thing, often seeking to balance new evidence with deference to established authority. And decisionmakers may also consider how a revision will affect trust in the system as a whole. In the 1990s, for example, the rotavirus gastroenteritis infection killed more than 130,000 children globally each year. In 1998 the pharmaceutical company Wyeth released a vaccine, called RotaShield, that dramatically reduced the mortality rate. Within a year, however, doctors and patients poured in with complaints. Among the inoculated, there seemed to be a small increase in a bowel condition called intussusception, which in rare cases can be deadly. In 1999, after 15 reported cases of vaccine-related intussusception, both the Vaccine Adverse Event Reporting System (VAERS) and the Centers for Disease Control ordered that RotaShield be withdrawn from the American market. It’s worth noting that VAERS is limited by the honor code: Adverse events are not confirmed.

*

In a 2012 paper titled “The First Rotavirus Vaccine and the Politics of Acceptable Risk,” Jason Schwartz, then a fellow at the University of Pennsylvania, explored the thinking behind the withdrawal. In his view, the decision wasn’t purely evidence-based. Schwartz told me that while some “argued that keeping the vaccine would have, in absolute terms, saved more lives,” the decisionmakers weighed trust: “You can’t have a vaccine out there with a notable risk of a harmful condition.”

According to this reasoning, the RotaShield reversal should increase our trust in vaccines: It shows that the system we use to monitor them works. (Two safer rotavirus vaccines have since been introduced and remain in use.) Vaccines such as MMR have been monitored for decades by the same system, and observers have seen no alarming signs—proof of their extraordinary safety. We’ve recently seen similar safety processes play out with the AstraZeneca and Johnson & Johnson Covid-19 vaccines. Still, a paradox of medicine is that the steps we take to make the system more trustworthy can make it seem less so.

THE FLIP SIDE of that paradox is that getting doctors to be comfortable expressing uncertainty may be the surest way to instill patient trust. Steven Hatch, a professor of infectious diseases at the University of Massachusetts, argues that medical reversals unsettle us because both medical professionals and patients are too fixated on being sure. “The public often thinks that they go to their doctor, the doctor runs the test, and the test reveals the truth,” Hatch told me. “But most of the time, we weigh sets of data and arrive at weighted possibilities which are not rock-solid.”

Doctors might approach different kinds of patients differently. Some people are comfortable with uncertainty and risk; others, says Hatch, struggle “to deal with ambiguity in their lives in general.” With the latter, doctors must resist the temptation to create a false sense of certainty, because “it’s really when things go wrong that a patient may feel cheated by the system.”

Hatch’s observations made me think of Diane, a woman I met a few years ago at a yoga retreat. Now in her sixties and retired, Diane is healthy, active, and cheerful, but she’d gone decades without visiting a doctor. She’d avoided preventative screenings of all kinds, in large part because it seemed to her that medical advice is always changing.

A few years ago, one of Diane’s friends—a woman who’d also avoided routine screenings—died of colon cancer. This inspired Diane to make a few doctor’s appointments and, in December 2019, she had her first physical exam since the early 1990s. Still, she found herself confused about how much uncertainty was normal in the doctor-patient relationship. She told me that when she asked her doctor if a prescribed skin cream would make her skin sensitive to the sun, her doctor told Diane that sun sensitivity wasn’t a side effect. Later, at home, Diane looked up the medication and found a warning that the cream actually did make people more sensitive to sunlight. “The doctor admitted to being unsure, which didn’t bother me,” Diane said. “But then she ended up telling me the wrong information. It’s hard for me to overlook that.”

Diane has struggled with the changing recommendations during the pandemic, and with figuring out how they should shape her behavior. “It almost seems like no one knew what they were talking about,” she recently told me. “First, it was no mask, then it was mask. Now, it’s two masks. It’s hard to keep up.”

Diane’s husband is a pilot, so I suggested a flying analogy. Sometimes a pilot who has been flying the same route for years has to shift because of severe turbulence or weather, perhaps flying thousands of feet higher or lower than what was originally planned. Usually the pilot announces the change to the cabin, and the passengers understand. Most don’t see the pilot as newly untrustworthy or incompetent; on the contrary, they’d worry if the plane shifted course and no announcement was made. Changes are inevitable when new information arrives, and transparency should increase trust, not erode it.

 

The Re-Emergence Effect

It will take time and patience to reemerge from the collective crisis of the pandemic with our mental and physical health intact.

When I met Darren Sudman six years ago, at an event in Palm Springs, I didn’t expect that his story would be one that I would return to time and again as I began examining what makes us thrive and heal after difficult times.

Sudman introduced himself as a former lawyer and a founder of a nonprofit. In 2004, Sudman and his wife, Phyllis, experienced every parent’s worst nightmare: Their three-month-old son, Simon, was found motionless in his crib. He had passed away from sudden infant death syndrome (SIDS), later deemed to be secondary to a heart rhythm disturbance called “long QT syndrome.”

Sudman’s nonprofit, Simon’s Heart, was created with the purpose of screening children early in life. It has kept us in touch over the years. But it was what Sudman shared about how he emerged from this unspeakable tragedy, and was able to move forward, that has continued to stay with me — particularly during this time as I reflect on our collective reemergence after the pandemic.

“My daughter was two and she needed me to get out of bed every day. She was really young and didn’t have a grasp of what was going on, and I had to take care of her. That forced me to wake up and live every day as best I could — she was my motivation,” Sudman told me. He also shared advice his co-worker provided at the time: “‘When you feel grief, let it pull you under and don’t resist it — it’s temporary and when you’re ready, you’ll come back up.’ This idea continues to work for me.”

In March 2021, a survey from the American Psychological Association found that 49% of adults reported feeling uncomfortable about returning to in-person interactions when the pandemic ends, and this included those who were vaccinated.

In China, after lockdowns lifted and people reemerged, over 10% met diagnostic criteria for post-traumatic stress disorder (PTSD). Indeed, for roughly 14 months most of us adjusted to a modified sense of “normal,” in much the same way a person living in a cave for a year may adjust to the lack of cognitive and light stimulation.

Change — even if it comes in the form of freedom — is still uncomfortable. So, it’s no surprise that some doctors are admitting to their own reemergence anxiety, that this summer terrifies a lot of people (perhaps especially introverts), and that many are worried about returning to work. Things will get better and the pandemic as it stands will end and Covid is most likely transforming into an endemic seasonal virus, yet all signs are clear that we must prepare for a reemergence effect.

Javeed Sukhera, chief of psychiatry at Hartford Hospital in Connecticut, shared that the reemergence process may feel similar to grief. “Especially for those who struggle with tolerance for ambiguity and when circumstances are not in their control,” Sukhera shared, “They will either adapt to the stressor and reflect more on the meaning of things, or risk of falling back into maladaptive ways of coping.”

*

Reemergence effects are not new.

We can look at butterflies as an example from nature — a caterpillar spends up to two weeks in a cocoon dissolving into a stew of cells, which it then partially ingests before swiftly emerging as one of our most prized insects.

I think back to a training in humanitarian emergencies I took at Harvard several years ago. The crisis situations were almost always in developing countries, where we needed to sort out food, water, and safety (for instance, from civil war and infectious diseases). A core part of our training was how to reemerge from the crisis with our mental and physical health intact. This involved time and connecting to resources to integrate back into the societies we had left — lessons I took to heart and applied during research or clinical work in low resource settings.

There are also examples from history.

Some Holocaust survivors, once freed from Auschwitz, marched across the camp and to freedom, but promptly returned: Writer and psychologist Edith Eger suggested, “They didn’t know what to do with their freedom,” and a return to life was challenging.

We see this in medicine as well.

compelling case of a man who spent decades legally blind had his eyesight restored only to suffer a psychological breakdown as he reemerged with the vision he had become accustomed to not having. The criminal justice system is also illustrative: The recent release of Joe Ligon, who spent 68 years of his life incarcerated, suggests that his true sense of freedom may be linked to how well he is supported during his reintegration into society. Indeed, once we start looking, we see “reemergence effects” everywhere — moments when, after spending a length of time in one state and having adjusted, we are forced to shift to another. Even if our new state is objectively better, our minds are still impacted.

Rachel Yehuda, a professor of psychiatry at Mount Sinai who specializes in trauma, expected many would seek therapy during Covid, the numbers were not as high as expected, which suggests to her that there may be an immense need after the crisis as part of our reemergence.

Joy Harden Bradford, an Atlanta-based clinical psychologist, agrees. “Many people may experience a post-traumatic stress response several months after we emerge that may take them by surprise as they may be getting through this difficult time by not fully acknowledging and processing what’s been happening, likely because it was their only way to keep functioning,” Bradford said.

As such, part of planning for our reemergence will involve anticipating our future mental health needs. Reconstruction after a humanitarian crisis is common, and often provides an opportunity for mental health reform; this was echoed in a UN report published last year. The idea of “building back better” for children’s mental health is instructive and could apply more widely.

“If I had a magic wand, in terms of building unlimited capacity for healing, I would initiate a campaign called ‘Let’s Talk About it,’ meaning, talk about the challenges, and the pain, and how we felt at the time. And it wouldn’t necessarily have to be with a mental health provider,” Yehuda told me. “Ideally, we would come together with people we know in our communities, in places of worship, the gym, yoga studio, or book club and ask each other, ‘What was it like for you?’”

And we may very well emerge better in some ways, perhaps a bit surprised by our own resilience, a point Yehuda wants to underscore.

“Time does heal, and the desire to flex our resilience muscles is powerful. That most of us will recover is an important public health message,” she shared.

*

With butterflies, it turns out that my understanding of their reemergence was incorrect. There’s more to the process. When a butterfly emerges from the cocoon it’s still a goopy wet mess. Its wings are too small to fly. To expand them, it must actively pump in fluid from its abdomen — a bit like blowing up a balloon. Then its wings must dry under the sun. And then — as anyone who has spent a prolonged length of time in a hospital bed, and experienced muscular deconditioning, knows well — the butterfly must exercise its fragile wing muscles enough to ensure they stay up against gravity in order to fly.

In other words, a butterfly’s reemergence isn’t swift at all: it takes intention, time, and effort.

Our collective reemergence may be similar. It must be handled with care, patience, and ideally capacity to receive our mental health needs on the other side of this pandemic. Engaging in a collective reenvisioning both around what capacities should be built now, in preparation for that reemergence is part of our collective post-traumatic growth, and goes beyond resilience to involve creating of meaning from crises, which could perhaps buffer some of the harmful elements of the reemergence effect.

Though I didn’t appreciate it six years ago, this was perhaps the biggest lesson I learned from Darren Sudman, which I hope we can all put into practice today as we reemerge stronger and more whole. Sudman’s intentional efforts to steer his family’s crisis into one that could help other parents helped offset his personal horror of reemerging as a parent who had lost a child.

“We had just suffered one of the worst tragedies but through it we [created] new narratives that involve helping prevent this from happening to other children, meeting families with similar experiences. When Jaden, our third child, came home, he brought another ray of sunshine to our house and reinforced the fact that life goes on and there’s still goodness.”

**Originally published in Elemental in May 2021**