Human Genetics Needs an Antiracism Plan

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The study of human genetics emerged from a deep curiosity of our human inheritance that was firmly rooted in white supremacy. Francis Galton, one of the fathers of human genetics, who coined the term “eugenics,” published Hereditary Genius (in which he asserted the genetic “superiority” of the upper classes) in 1869, 35 years after Great Britain ended slavery in British-held colonies and a mere four years after the United States emancipated enslaved African Americans. It is easy to contextualize Galton’s belief in his own superiority. It sprang from age-old hegemonic social structures that protected his power and privilege while preventing others (e.g., women, people of color, the poor) from accessing opportunities in the academy and beyond. Academic science (as opposed to science writ large, which has always been the domain of innovative laborers, caregivers and land stewards) was kept in the hands of a privileged few who believed it to be not only their social right but also their innate right.

Combined with Mendelian determinism, which was wildly popular in the U.S. in the early 20th century, Galton’s worldview set the stage for organized efforts of American eugenicists and segregationists. Eugenicists worked to link genetics to race, codifying into scientific circles the false notion of “genetic races.” Eugenics was not a fringe idea; it was solidly mainstream with broad reach and significant impacts on public opinion, federal immigration policy, Supreme Court decisions and various state legislative policies in the United States and in Europe. The U.S. Eugenics Record Office (ERO) led the way in crafting public policy aimed at disenfranchising racial minorities, immigrants and poor white populations.

Some of the more notable policies directly written or heavily influenced by the ERO included the Virginia Racial Integrity Act and the Eugenical Sterilization Act, passed on the same day in 1924. American sterilization laws, written with the aid of prominent American members of the scientific community, became the blueprint for the sterilization laws and practices of the Nazi regime. The ERO shuttered its doors in 1939, but its legacy is still felt today. Indeed, the involuntary sterilization of incarcerated people, which continues to occur in the 21st century, is a civil rights abuse inspired by eugenics.

How do we teach and talk about this incredibly problematic history? Despite the many scholarly texts available, there is rarely an open and frank acknowledgement that the very foundations of our field were rooted in the false and dangerous beliefs of biological race and human racial hierarchies. Today, there is an effort to distance modern genetics from the harms of eugenics. This shameful aspect of our shared history is often separated from the primary curriculum for human genetics trainees, relegated to classes in “ELSI” (ethical, legal and social issues), which are usually electives—or, worse, just one day of training. In large part, we are failing to disclose this startling racist legacy to young scientists entering the field; a sad irony for a discipline devoted to human inheritance. Our failure to acknowledge the racist origins of modern genetics also has repercussions in our (in)ability to attract and retain members of underrepresented communities in genetics and other STEM training programs. Thus, as time marches on, the knowledge of our harmful racist history is fading while the culture of whiteness continues to dominate.

Today, the white perspective threatens to turn precision medicine into a tool for structural violence, again. Most of the large-scale genomewide association studies (GWAS) of complex chronic disease have been performed in white European–descent populations. This practice is now widely acknowledged as problematic. Nevertheless, results from available Eurocentric GWAS are now demonstrate promising clinical utility—in individuals of European descent. Poor transancestry performance and predictive utility of genetic scores is a well-known problem with a straightforward explanation.

While the underlying biology of complex disease is largely shared across human populations, allele frequencies and linkage-disequilibrium structures tagging the contributory genes differ as a consequence of different demographic histories. This results in genetic tests and scores that do not translate well across populations. There are various statistical approaches under development to improve the transancestry portability of genetic score information, but it is entirely possible that the problem will not be fundamentally solved until global inclusion in genetic studies is standard.

When we identify white supremacy as the paramount problem in our field’s history, it becomes clear that it is still our problem today. Lack of diversity in available genetic data is not an accident; it is an inevitable consequence of systemic racism in biomedical research. The difficulty in recruiting non-European populations into genetic research today is a direct result of our history of white centering, gatekeeping by white academics and decades of human rights abuses suffered at the hands of white researchers. White centering is still so embedded in human genetics that even though we recognize these problems, millions of dollars are being invested in programs to capitalize on Eurocentric genetic scores and tests that are primarily effective for people of European descent, potentially leaving communities of color behind in precision medicine advancements.

It is true that, in medicine, we often have to accept the reality that only a proportion of people may be helped with any given treatment or prevention strategy. Of course, there are treatments and diagnostic tools that are less effective or ineffective for some people. This may be tolerable when the ineffectiveness is random. However, when the ineffectiveness is not random—when the ineffectiveness in fact targets only a certain demographic that is already experiencing grave health disparities—is this tolerable? Are we not in fact creating harm by allowing greater inequity to impact already disadvantaged groups? The first principle of medicine is “do no harm”; it is not “do no harm to white people.”

It was difficult to admit to myself the role that I have played in the creation of these equity problems by failing to consider the nonwhite perspective. In this moment, we are presented with an opportunity to adopt a true culture change—one of antiracism—in the field of human genetics. To embrace this opportunity, we must shift in our thinking about how racism manifests in science. Specifically, it’s time to turn our attention to the problem of racist ideas in science. When we appreciate that systemic racism is not a problem of certain individuals, but rather a problem of ideas (many of which were popularized by eugenicists), we become more aware of its vast scope. Even if we are not to blame for these ideas, as members of the human genetics field, we can take responsibility for them. We have inherited their consequences and if we do not empower ourselves to challenge the legacy of our field, who will?

For example, human geneticists of today are perfectly positioned to push back on the myth that race has any basis in biology, a myth that was ingrained by the flawed forefathers of our field. Some modern day geneticists are already devoted to this work. Others routinely, if naïvely, perpetuate the scientifically inappropriate conflation of race and ancestry. The trouble is that most human geneticists know very little about race. Scholars in sociology, anthropology, critical race theory, gender studies, etc. who have a far more sophisticated understanding of the origins of race and racism, have so much to teach us.

Human genetics is not strictly a biological science, it is also a social science, and we ignore other social sciences to our peril. Through their scholarship we stand to gain deeper insight into our own science. Can we humble ourselves enough to learn from those outside our field? Together, could we dispel the myth of biological race? Again, we cannot do this alone, as most of us are ill-equipped to confront the rhetorical science misinformation bombarding society on a daily basis. Engaging experts in strategic science communication, along-side of social scientists and geneticists, is mission critical to meaningfully de-biologizing race.

Human genetics is a science that I love, a science to which I have devoted my life, and a science that I believe could be a powerful force against racist ideas in medicine and society. But this potential can only be reached if we are willing to reckon with our role, collectively and individually, past and present, in upholding white supremacy and structural violence in science and academia. As educator and author Catrice M. Jackson has observed, “If you don’t have an antiracism plan, you plan to be racist.”

An antiracism plan will require challenging everything from the speed to the priorities of human genetics research, but if we are serious about reducing health disparities through precision medicine we must push back on the culture of whiteness in medicine and research. We can begin by explaining that equitable translation of genetic medicine will be a slow process because of the inequity that our field has already created. Efforts to increase diversity among scientists are desperately needed, and unless we are committed to dismantling inherently racist structures and ideas in science, we will never achieve real equity.

We can empower ourselves and each other to acknowledge our own complicity and call on our funding institutions, our professional societies and our departments to make antiracist action a priority in our daily research practices. The long-overdue awakening emerging in American consciousness is incongruent with business as usual in our field, and it is past time to call in the revolution. Human genetics needs an antiracism plan now, otherwise, we must admit we plan to be racist.

Author’s Note: I would like to acknowledge and thank colleagues and friends who provided support, input, helpful references and thoughtful conversation, including Jada BennTores, Ellen Clayton, Nancy Cox, Consuelo Hopkins Wilkins, Tad Davis, Brigid Davis and Donald Hucks.

This is an opinion and analysis article.


Scientific American Content: Global

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