Mixed Race Studies

The Law and Genetics of Racial Profiling in Medicine

Harvard Civil Rights-Civil Liberties Law Review
Volume 39, Number 2 (Summer 2004)
pages 391-483

Erik Lillquist, Associate Provost for Academic Projects & Professor of Law
Seton Hall University School of Law, Newark, New Jersey

Charles A. Sullivan, Professor of Law and Senior Associate Dean for Finance & Faculty
Seton Hall University School of Law, Newark, New Jersey

Modern medicine has embraced the use of race. Race is routinely employed by medical researchers, clinicians, and community health officials. Moreover, medicine’s use of race is not done in the shadows, but right before our eyes. Physicians note our race when treating us and medical researchers routinely publish results that classify subjects based on race. Researchers debate the relative merits of using race in prominent journals and doctors have freely claimed in major newspapers that they use race.¹ Recently, the New York Times featured Dr. Sally Satel on the cover of its Magazine Section proudly proclaiming, “I am a racially profiling doctor.”² A year earlier, the same paper reported on FDA approval of clinical trials for a heart drug designed exclusively for African Americans.³

Curiously, the question of whether biological differences in the races should be taken into account by our health care institutions has gone largely unconsidered in the law journals. Given the pervasive role law plays in medicine and research, this is surprising. This omission is especially striking because race otherwise dominates law review articles.⁴ Whether the topic is affirmative action, employment discrimination, environmental justice or any of a myriad of areas where race encounters the law, the reviews have thoroughly canvassed the problem, often with a strong interdisciplinary focus. Accordingly, law journals have devoted significant space to race where it intersects health care in one area: the cause of racial disparities in the health status of African Americans and other minorities.⁵ But the conscious use of race to diagnose and treat individuals continues with almost no discussion, despite all of the attention paid to the topic in both the popular media and medical literature. This Article fills that void.

Taking race into account in medical treatment seems at least as objectionable as other, explicitly prohibited uses, especially given the egregious acts perpetrated against racial minorities in this country in the name of medicine. For example, in the notorious Tuskegee Syphilis Experiment, the United States Public Health Service deliberately failed to treat nearly 400 African American males suffering from late-stage syphilis.⁶ Further, the notion of genetic racial differences triggers associations with the eugenics movement⁷ and repeated “scientific” efforts to prove the intellectual inferiority of African Americans.⁸

Even more dramatic is the increasing acceptance among researchers and clinicians of race as an appropriate focus of medical study and treatment. Indeed, this may be an unintended byproduct of the medical and legal literature on racial disparities in health. For example, to explain why African Americans have higher mortality rates from heart disease, researchers have studied whether the disparity may be partially accounted for by genetic differences between African Americans and whites—differences that enlightened modern medicine can identify and then address.⁹ To that end, medical journals increasingly explore possible racial connections with diseases and treatments. In 2001, a pair of studies in the New England Journal of Medicine focused on possible differences in drug responses among black and white heart patients. One study found racial differences for one drug;¹⁰ the other found no such differences for another.” Other examples abound.¹²

The notion that medicine should reject a colorblind model in favor of taking race into account marks a significant shift in perspective. Proponents argue that, unlike many of their predecessors in the medical and scientific community, they will take race into account only when it is appropriate to do so.¹³ But that claim was also made by predecessors whose views are now widely condemned.¹⁴ Furthermore, it occurs at a time when researchers are documenting the role that unconscious or semi-conscious racism plays in the delivery of medical treatment. For example, recent research has suggested that physicians prescribe different treatment for patients solely as a result of the patient’s race and/or gender.¹⁵ One study showed that physicians recommended cardiac catheterization at a lower rate for African American female patients than for African American males, white males, or white females, even though the symptoms presented were exactly the same.¹⁶ Another study showed that physicians prescribed analgesics to patients at different dosages depending upon the race of the patient and the gender of the physician.¹⁷ All of these differences are in-appropriate in terms of the current state of medical knowledge. Even if physicians can be cured of conscious bias, they no doubt will be influenced by the unconscious biases that plague American society.¹⁸

The problems of using race in health care have not gone unnoticed in the medical community. In 2001, the New England Journal of Medicine ran two editorials—one praising the research¹⁹ and the other claiming that attributing medical differences to race “is not only imprecise but also of no proven value in treating an individual patient.”²⁰ The New England Journal of Medicine reprised the 2001 dispute with a pair of articles in March 2003. Esteban Gonzalez Burchard of the University of California at San Francisco and Neil Risch of Stanford University argued that ignoring race will “retard progress in biomedical research,”²¹ while an opposing article by Dr. Richard S. Cooper warned that scientists have been too quick to view genetics as the reason for greater susceptibility of African Americans to certain diseases when the real reason may be social factors.²² The reality is that more and more articles in scientific journals are reporting results by racial groups, a result federal regulations encourage.²³

Almost completely ignored to date have been the legal implications of medicine’s use of race. Existing law, primarily the Equal Protection Clause, 42 U.S.C. § 1981 and Titles II and VI of the Civil Rights Act of 1964, renders many of these actions legally suspect. For instance, the use of race in selecting participants for clinical trials and in deciding the treatment of patients, we believe, may violate federal constitutional and statutory law. While nonclinical research that utilizes race is probably legal, it faces threats from proposals such as the California Racial Privacy Initiative,²⁴ rejected this past year.

Given the disconnect between what medicine does and what the law appears to allow, what should be done? We believe that, in quite limited circumstances, the law should permit the use of race in medicine. Race, although socially constructed, is a useful proxy for both a person’s ancestry and for environment.²⁵ As we explain in more detail in this Article, both ancestry and environment can play an important role in determining a person’s health. Of course, race is never more than a proxy, and other and better methods can usually be used to obtain the same information about ancestry and environment. But, in a few cases, race may be the best, and perhaps only, means of obtaining this information. When and if this is true, the use of race can be justified.

We acknowledge that the use of race in medicine, as anywhere else, is fraught with peril. Researchers and clinicians in the past have visited grave injustices on individuals in the pursuit of race-driven medicine. The continued use of race by physicians and other health care professionals may only reinforce the unconscious biases that infect medicine, and it may tend to validate the racism of others in society more generally. These costs have to be weighed before the use of race should be permitted. But even after considering them, we still believe that there are some very limited circumstances where the use of race ought to be permitted. This Article is, in large part, designed to define carefully the rare circumstances in which the use of race will be appropriate.

The Article proceeds as follows. Part I sets the stage by sketching the underlying debate about racial disparities in health status and health care and the ways in which the question of race in health is likely to arise. It also addresses the special problems of using race. Part II then turns to the threshold question for any such discussion, “What is Race?,” concluding that “race” as it is currently used in America is socially constructed. While race, as a biological construct, has no meaning, modern human evolutionary theory tells us that, in quite limited circumstances, differences in the frequency of some genes may arise between different races as they have been socially constructed. This is (generally) not because of natural selection, but rather the result of an evolutionary force known as genetic drift, which causes population groups that are separated from one another to diverge in the frequency of genes.

Part III then canvasses the scientific literature to assess the limited situations when “race” may be suitable for medical use because of genetic factors that cannot otherwise be efficiently taken into account. Race, when used as a proxy for ancestry, may tell us something about both disease susceptibility and drug sensitivity. In addition, when seen as a proxy for environment, race can also tell us something about disease susceptibility. Part IV moves from science to law, reviewing the various legal regimes that bear on the use of race in the medical context. We conclude that, in general, the use of race in medicine raises serious legal issues. The main exception is that race-based studies, with no clinical component, would appear to be legal. Finally, Part V brings together the themes of social construction of race, genetically related populations, and the existing legal framework in order to draw normative recommendations for the law’s approach to “racial profiling” in medicine. In particular, we propose the creation of a defense for the limited use of race in treatment, which we describe as a bona fide treatment rationale defense. In addition, we suggest that efforts to include (but not to exclude) racial groups in clinical trials ought to be permitted, and that efforts to exclude groups ought to be resisted. Finally, we accept—for now—the continued use of race in non-clinical studies…

Read the entire article here.

When Your Medical Treatment Depends On Your Race

The Establishment
2018-04-11

Cici Zhang

Human red bone marrow Jill Doughtie

Why do minority patients have a much harder time finding a match for bone marrow transplants?

It’s not easy to look for a specific boy among hundreds of first graders, especially when they swarm into lines for cupcakes and cotton candy. On this fall bake-sale day, the cafeteria of Public School 106 in the Parkchester section of the Bronx is buzzing with energy and children’s happy shrieks. A few teachers shout across the hall to keep things from spinning out of control. And when I finally spot 6-year-old Asaya Bullock, he seems to be well in hand.

“Ready for your green soup?” Charline, his mother, takes out a thermos with a Spider-Man design on the side.

The green soup is one of the only three things Asaya has ever been able to eat. He drinks it for breakfast, for lunch, for dinner; he drank it for the whole trip that his family took to the Caribbean to visit his mom’s relatives. Luckily, with broccoli, kale, green beans, and some minced meat, Asaya’s soup is at least healthy — and better than the small bowl of potato chips used as comfort food after his bi-weekly belly infusion. The recurring medical procedure helps keep him alive…

Read the entire article here.

Why the idea that the English have a common Anglo-Saxon origin is a myth

The Conversation
2017-12-15

Duncan Sayer, Reader in Archaeology
University of Central Lancashire

A diverse history. Witan hexateuch via Wikimedia Commons

The idea that there is a common Anglo-Saxon ancestry based on biology is gaining currency among some right-wing and religious groups in the UK and US.

In the UK, the new leader of the UK Independence Party, Henry Bolton, suggested in a radio interview in October that “in certain communities the indigenous Anglo-Saxon population is nowhere to be seen.”

In August, a religious group called the Odinist Fellowship wrote to the Church of England demanding two churches as reparations for a “spiritual genocide” which it claims began in the seventh century AD.

The Odinists use old Icelandic texts to reconstruct the “indigenous” religion of the Anglo-Saxons which they claim was oppressed with the arrival of Christianity. The Anglo-Saxons are commonly believed to have migrated into Briton in the fifth and sixth century AD. Iceland by contrast was inhabited in the ninth century by Viking settlers. In the US, this mixed up medievalism is associated with the white supremacist alt-right who use Anglo-Saxon and Viking motifs.

But archaeological research, which examines ancient DNA and artefacts to explore who these “indigenous” Anglo-Saxons were, shows that the people of fifth and sixth century England had a mixed heritage and did not base their identity on a biological legacy. The very idea of the Anglo-Saxon ancestor is a more recent invention linked closely with the English establishment…

Read the entire article here.

Carlos Arias Vivas | DNA tests don’t define your identity

The Daily Pennsylvanian
Philadelphia, Pennsylvania
2018-03-14

Carlos Arias Vivas

CC0

Convos with Carlos | 23andMe results can’t change your upbringing

During one late night bonding session with my hallmates, one of them revealed to the group that they took a DNA test and discovered more about their background. Intrigued, I sought out to buy one of the kits for myself. The major players in this industry are Ancestry.com and 23andMe; both offer DNA tests that can shed light on your lineage as well as an optional health risks assessment.

Now, I knew that these tests are very expensive. For 23andMe, the basic ancestry service costs $99 and the Health + Ancestry service costs $199. I ended up choosing to go with 23andMe based on positive online reviews. Also, this was the brand my hallmate had used. Luckily, for me, there was a special Black Friday sale, so I snatched up the kit and waited for it to arrive at Amazon@Penn.

Before doing the spit-test that is required, I knew that I was going to be Latino. My parents are from Ecuador, and I imagined that my ancestry composition would show a high concentration of Latino ancestry. I never questioned my background because that was never a conversation I had with my family. After countless times of spitting in my tube, I entered my registration code to track my kit, sealed up the test tube in the box, and dropped off my sample at the post office.

This “waiting game” was an agonizing process. But even though I was excited to receive my results, I knew that the outcome wouldn’t dramatically change who I was. Whatever 23andMe had in store, my upbringing is already set in stone…

Read the enetire article here.

DNA tests are all fine and dandy, but they can never tell us who we really are

Stuff (The Dominion Post)
Wellington, New Zealand
2018-04-03

Geoff Chambers, Senior Research & Teaching Fellow (Retired)
Victoria Unversity of Wellington, New Zealand

Paul Callister, Retired Economist
Wellington, Victora, New Zealand

‘So just who are we? Ancestry and culture became blended in the concept of ‘ethnicity’ popular from around the 1980s. 123rf.com

OPINION: Who am I and where do I come from? Many New Zealanders ask themselves these important questions. This is the basis of our identity as individuals and as members of groups. The article Seeking the truth in DNA (March 24) tells us just how popular it has become to seek answers through genetic testing companies like Ancestry.com. For a few dollars and a small saliva sample all will be revealed.

But will it? What these tests do show is who our deep-time ancestors were and where they came from. Their results may be surprising to some. It is possible to be born in Dublin to two rock solid Irish parents and yet be told that you are Scandinavian. This dilemma can only be resolved by learning about historical population movements and invasions.

In New Zealand our focus is often on the Māori v European identity. The article above told the story of Oriini​ Kaipara, whose DNA test showed that she was 100 per cent Māori rather than just 80 per cent as she had expected. This sparked a ‘blood quantum‘ debate. This became entwined with a wider discussion led by Simon Bridges about what constitutes our sense of identity. It is time now to unpack the history of these ideas for all round better understanding…

Read the entire article here.

Eugenics in Brazil: In the early 20th century, elites believed racial improvement was only possible with a project favoring predominance of the white race

Black Women of Brazil: The site dedicated to Brazilian women of African descent
2018-02-27

Tiago Ferreira, Staff
Vix

What was the eugenics movement in Brazil: so absurd that it is difficult to believe

Eugenia is a term that came from the Greek and means ‘well born’. “Eugenics emerged to validate hierarchical segregation,” Pietro Diwan, author of the book Raça Pura: uma história da eugenia no Brasil e no mundo (Pure Race: A History of Eugenics in Brazil and the World), explains to VIX.

How eugenics was born

The idea was disseminated by Francis Galton, responsible for creating the term, in 1883. He imagined that the concept of natural selection of Charles Darwin—who, by the way, was his cousin—also applied to humans.

His project was intended to prove that the intellectual capacity was hereditary, that is, it passed from member to member of the family and, thus, to justify the exclusion of the blacks, Asian immigrants and disabled of all the types…

Read the entire article here.

How Not To Talk About Race And Genetics

BuzzFeed
2018-03-30

Micah Baldwin / Via Flickr: micahb37

Race has long been a potent way of defining differences between human beings. But science and the categories it constructs do not operate in a political vacuum.

This open letter was produced by a group of 68 scientists and researchers. The full list of signatories can be found below.

In his newly published book Who We Are and How We Got Here, geneticist David Reich engages with the complex and often fraught intersections of genetics with our understandings of human differences — most prominently, race.

He admirably challenges misrepresentations about race and genetics made by the likes of former New York Times science writer Nicholas Wade and Nobel Laureate James Watson. As an eminent scientist, Reich clearly has experience with the genetics side of this relationship. But his skillfulness with ancient and contemporary DNA should not be confused with a mastery of the cultural, political, and biological meanings of human groups.

As a group of 68 scholars from disciplines ranging across the natural sciences, medical and population health sciences, social sciences, law, and humanities, we would like to make it clear that Reich’s understanding of “race” — most recently in a Times column warning that “it is simply no longer possible to ignore average genetic differences among ‘races’” — is seriously flawed…

Read the entire letter here.

How to Talk About ‘Race’ and Genetics

The New York Times
2018-03-30

David Reich, Professor of Genetics
Harvard Medical School
also, Investigator, Howard Hughes Medical Institute

Angie Wong

In a Sunday Review essay last weekend, David Reich, a geneticist at Harvard, argued that science is changing how we think about “race” and urged a candid discussion of the findings, whatever they may be. Hundreds of readers left comments, many expressing worry about the possibility that the results could be misinterpreted or nefariously applied. Here are Dr. Reich’s responses to some of the comments. — The Editors…

…From my point of view, it should be possible for everyone to hold in their heads the following six truths:

1. “Race” is fundamentally a social category — not a biological one — as anthropologists have shown.
2. There are clear genetic contributors to many traits, including behavior.
3. Present-day human populations, which often but not always are correlated to today’s “race” categories, have in a number of instances been largely isolated from one another for tens of thousands of years. These long separations have provided adequate opportunity for the frequencies of genetic variations to change.
4. Genetic variations are likely to affect behavior and cognition just as they affect other traits, even though we know that the average genetic influences on behavior and cognition are strongly affected by upbringing and are likely to be more modest than genetic influences on bodily traits or disease.
5. The genetic variations that influence behavior in one population will almost certainly have an effect on behavior in others populations, even if the ways those genetic variations manifest in each population may be very different. Given that all genetically determined traits differ somewhat among populations, we should expect that there will be differences in the average effects, including in traits like behavior.
6. To insist that no meaningful average differences among human populations are possible is harmful. It is perceived as misleading, even patronizing, by the general public. And it encourages people not to trust the honesty of scholars and instead to embrace theories that are not scientifically grounded and often racist…

Read the entire article here.

Who We Are and How We Got Here: Ancient DNA and the New Science of the Human Past

Pantheon
2018-03-27
368 Pages
Hardcover ISBN: 9781101870327
Ebook ISBN: 9781101870334

David Reich, Professor of Genetics
Harvard Medical School
also, Investigator, Howard Hughes Medical Institute

David Reich describes how the revolution in the ability to sequence ancient DNA has changed our understanding of the deep human past. This book tells the emerging story of our often surprising ancestry – the extraordinary ancient migrations and mixtures of populations that have made us who we are.

• A gripping account, from the head of a world-leading lab, of the picture of human history and ancestry emerging from the revolution in the study of ancient DNA.
• Describes the evidence for ancient migrations and ghosts of long-lost populations, now revealed through comparing the genomes of ancient modern humans, archaic humans, and present-day populations.
• Considers what the latest research tells us about the often surprising ancestry of the people who now inhabit Europe, Asia, Africa, and the Americas.
• Shows how there are no ‘pure’ races: all modern human populations are mixtures of more ancient ones.
• Shares new insights into how human populations spread across the world, and makes a compelling argument that ancient DNA is fundamentally changing our picture of who we are.

Here is a groundbreaking book about how the extraction of ancient DNA from ancient bones has profoundly changed our understanding of human prehistory while resolving many long-standing controversies.

Massive technological innovations now allow scientists to extract and analyze ancient DNA as never before, and it has become clear—in part from David Reich’s own contributions to the field—that genomics is as important a means of understanding the human past as archeology, linguistics, and the written word. In Who We Are and How We Got Here, Reich describes with unprecedented clarity just how the human genome provides not only all the information that a fertilized human egg needs to develop but also contains within it the history of our species. He explains how the genomic revolution and ancient DNA are transforming our understanding of the lineage of modern humans and how DNA studies reveal the deep history of inequality—among different populations, between the sexes, and among individuals within a population. His book gives the lie to the orthodoxy that there are no meaningful biological differenced among human populations, and at the same time uses the definitive evidence provided by genomics to show that the differences that do exist are unlikely to conform to familiar stereotypes.

Table Of Contents

• Acknowledgments
• Introduction
• Part I The Deep History of Our Species
  • 1 How the Genome Explains Who We Are
  • 2 Encounters with Neanderthals
  • 3 Ancient DNA Opens the Floodgates
• Part II How We Got to Where We Are Today
  • 4 Humanity’s Ghosts
  • 5 The Making of Modern Europe
  • 6 The Collision That Formed India
  • 7 In Search of Native American Ancestors
  • 8 The Genomic Origins of East Asians
  • 9 Rejoining Africa to the Human Story
• Part III The Disruptive Genome
  • 10 The Genomics of Inequality
  • 11 The Genomics of Race and Identity
  • 12 The Future of Ancient DNA
• Notes on the Illustrations
• Notes
• Index

How Genetics Is Changing Our Understanding of ‘Race’

Sunday Review
Gray Matter
The New York Times
2018-03-23

David Reich, Professor of Genetics
Harvard Medical School
also, Investigator, Howard Hughes Medical Institute

Angie Wang

In 1942, the anthropologist Ashley Montagu published “Man’s Most Dangerous Myth: The Fallacy of Race,” an influential book that argued that race is a social concept with no genetic basis. A classic example often cited is the inconsistent definition of “black.” In the United States, historically, a person is “black” if he has any sub-Saharan African ancestry; in Brazil, a person is not “black” if he is known to have any European ancestry. If “black” refers to different people in different contexts, how can there be any genetic basis to it?

Beginning in 1972, genetic findings began to be incorporated into this argument. That year, the geneticist Richard Lewontin published an important study of variation in protein types in blood. He grouped the human populations he analyzed into seven “races” — West Eurasians, Africans, East Asians, South Asians, Native Americans, Oceanians and Australians — and found that around 85 percent of variation in the protein types could be accounted for by variation within populations and “races,” and only 15 percent by variation across them. To the extent that there was variation among humans, he concluded, most of it was because of “differences between individuals.”

In this way, a consensus was established that among human populations there are no differences large enough to support the concept of “biological race.” Instead, it was argued, race is a “social construct,” a way of categorizing people that changes over time and across countries.

It is true that race is a social construct. It is also true, as Dr. Lewontin wrote, that human populations “are remarkably similar to each other” from a genetic point of view…

Read the entire article here.