Lynette Reid describes the work done at Dalhousie to diversify the case-based learning curriculum in the medical program.

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In the previous commentary I described the efforts of a committee at Dalhousie’s medical school to diversify the case-based learning curriculum, as the cases relate to a patient’s racialized identity. We strove to capture the racial diversity of our patient populations, to rectify racist assumptions built into the practice of many disciplines, and to dispel biological conceptions of race, among many other aspects of this large project. This commentary continues a discussion of the committee’s efforts with respect to racial diversification.

In the course of our research on the project, we have seen that tutors and students are struggling to put together two thoughts: that race is a social construct, and that we need better research to fulfill the promise of personalized medicine by representing global diversity. This tension is not so difficult to reconcile: there is global genetic variation, and racial categories bias our thinking about that variation. I suspect that what is harder to address is cognitive dissonance between the critical thinking represented in the curriculum and on-going scientific production of race-based clinical research and drug labelling.

Photo Credit: Bango Renders/freerangestock.com. Image Description: A close-up of a glowing DNA double helix with a blurred colorful background symbolizing genetic research and biotechnology.

Since I began at Dalhousie almost 20 years ago, Lewontin’s calculations demonstrating that there is vastly more genetic difference within than between “races” has been confirmed repeatedly with different analytic techniques and sampling. At the same time, this came to be seen as consistent with partitioning continuous population variation into “continental ancestry groups” that look suspiciously like traditional racial categories. There were many warnings from historians, sociologists, and ethicists at the time that the “convenient” device of marrying genetic diversity with US census categories and the implicit and explicit racial biases of physicians in practice could result in re-inscribing discredited biological views of racial difference. Catherine Bliss and Dorothy Roberts each document the failure of researchers to reach a consensus. They agreed to disagree, and the majority of them carried on conceptualizing genetic diversity along typological lines, while granting that variation is minute and continuous. And this is where we are – a handful of race-based prescribing guidelines that offer incomplete guidance for global and local genetic diversity, and people exploiting the resulting research to promote a resurgent ideology of white supremacy.

The FDA directs researchers to use US census categories to characterize trial participants and to do subgroup analyses using these categories for safety, efficacy, pharmacokinetics, and pharmacogenetics. Clinical research is a global enterprise: trialists around the world are required to answer nonsensical questions about how to fit each participant, whoever they are and wherever they live, into US census categories.

As we were working, the National Academies of Science, Engineering and Medicine (NASEM) released a report by and for genetics and genomics researchers recommending that researchers work actively towards (in most cases) abandoning the practice of attributing genetic similarity and difference to “ancestral origin”, a labelling that involves inferences from assumptions about reference groups sampled today, the evolutionary time frame of interest, and the stability/mobility of populations in demographic history. (They say “in most cases” because there is genetic research testing hypotheses about population history, and here the labelling of groups with cultural, historical, and geographical terms can be supported by evidence from, for example, history, archeology, linguistics.)

Moving away from the use of continental ancestral groups in medical research will involve  portraying genetic similarity and difference without group labels. Where global distribution of alleles matters, this can be portrayed in ways that capture their frequencies across regions.

The NASEM report is clear that genetics and genomics research needs conceptual change. Telling the FDA how to conceptualize race was out of scope.  They offer a useful video that walks you through a better conception of genetics and genealogy. My takeaway from this video is that everyone alive today shares all our genealogical ancestors, while each person’s genes come from a vanishingly small and somewhat random subset of those ancestors. The video doesn’t put numbers to this, but the point of common ancestry is around 7000 years ago; we lose any genetic connection to most of our ancestors around 12 generations ago (half of each parents’ genomes are randomly lost in recombination). At any location in my genome I may be more closely or distantly related to any person around the world, depending on which segment we’re talking about. A big web that joins us all and gives different answers to different questions about each person’s relatedness to specific others is the image we need to bring to thinking about genetics—not (for example) a line of direct descent from a group of phenotypically homogenous people sitting around a table in a cosy pub in Scotland.

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Lynette Reid is an associate professor in the Department of Bioethics at Dalhousie University.