Backtracking Your Double-Helix – Hobart and William Smith Colleges \
The HWS Update

Backtracking Your Double-Helix

“Current genomics research is not only ground-breaking, it’s also breaking ground,” Associate Professor of Women’s Studies and Director of the Fisher Center Betty Bayer said in introducing the final spring 2008 Fisher Center Series lecturer, Duke University’s Associate Research Professor of the Institute for Genome Sciences and Policy Charmaine Royal. During her lecture, “Genetics, Genomics and Ancestry,” Royal explored the interrelationship between these three areas and science, medicine and society. “If we take a definition of race like Stephen O’Brien’s, which classifies some races as ‘subspecies,’” Royal said. “We realize that this is at odds with the genetics definition of race which doesn’t include a biological basis for race. Essentially, most geneticists see people as 99.9 percent the same.” “A major difference between these two views is that O’Brien’s definition has become the basis for some racism, using his levels of diversity as a justification to rank one race below another,” Royal said. “The genetics view leaves no basis for these kinds of claims.” Using race and discrimination as her starting point, Royal began to explore the interplay between genomics, genetics and ancestry and science. “Most geneticists cite African as the most likely origin of the human species. Approximately 150,000 years ago, the human species originated on the continent,” Royal said. “Some researchers within the field believe that all genetic variation is within the African identity. However, most geneticists, like myself, believe that there is a lot of the variation goes on within that identity.” “If the basic genetics assumption is true that all of us are originally from Africa, then the difference between us may be nearly non-existence,” said Royal. “In truth, geography has been the major factor in genetic difference. However, even that difference is not huge. Usually, genetic difference is much less than any difference we see in physical features.” Royal then turned her attention to dispelling race- and genetics-based discrimination in medical cases. “If we examine a disease like sickle cell anemia, we find that ‘race’ has little to do with the statistical predominance of the disease in some African Americans,” Royal said. “It was geographical location and not ‘race’ that created the predisposition.” “The irony being that South Africans have the lowest occurrence of Sickle Cell Anemia of any group,” Royal said. “From this it’s clear that we have to think about how genes and environment interact. We have to think more broadly about genetics.” “In some medical cases it’s difficult to decide whether or not race-based decisions are ethical,” Royal explained. “The BiDil case is a perfect example of how solving health disparities can work against social justice. As the first medicine released exclusively for one social group—African Americans—BiDil seemed to begin to ‘pay attention to African Americans’ as the NAACP argued. At the same time, it raised many questions that I asked when testifying in the BiDil court case: Will all African Americans respond in a positive way? Who is an African American? And what about non-African Americans that a medicine like BiDil will help?” “With all of these questions and complications, I propose that we need a new cadre—from journal editors to the FDA to others—that change the way we see health and disease,” Royal said. “In terms of the social issues involved with genetics, genomics and ancestry, there is an issue with criminal law enforcement,” Royal said. “Recently, there was a collection of DNA taken from not only committed criminals but all arrestees in an area as well. This is a fairly large group—a prospect that should raise concern about having a database with a potential to be misused.” “There are other social implications of these fields,” Royal explained. “Questions such as: Who determines who you are? Is that identity even important? If so, how is it developed? What impact do DNA-based ancestry tests have on people’s identities? I tend to answer many these questions with a dynamic model which presents family, community, society as a whole and many other factors as interactive in creating identity.” Concluding this year’s Fisher Center Series with applause and admiration, Royal certainly gave her audience members a whole new way to think about themselves, their identities and their genes. “This was one of the first times I’ve ever heard someone formally discussing race and identity from the perspective of genetics,” said Hannah Zale ’09. “Her focus adds a whole new dimension to ethical questions I’m thinking about in terms of human genetic engineering. Professor Royal also gave us a whole new ways of thinking about genetics.” Author and co-author of numerous publications, Royal has published most recently Race and Ethnicity in Science, Medicine, and Society, The Ethical and Social Implications of Exploring African American Genealogies, Genetic and Social Environment Interactions and Their Impact on Health Policy, and The Role of Genetic and Sociopolitical Definitions of Race in Clinical Trials.

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