Mark(er)ing Race: An Ethnographic Study of Human Difference in Contemporary Genetics

Harvard University, Cambridge MA

Investigators

Abstract

This research, supported by the Science, Technology & Society program and the Biology Directorate at NSF under the Biology & Society initiative, notes that science and society are entering a pivotal moment with regard to understandings of race, human variation, and individual genetic risk. As genome-wide analyses are being funded in both the public and private sectors, scientists and members of the lay public remain unclear about the connections between social classifications of race and human genetic variation as these bear on disease risk. Nonetheless, genomic studies that sort DNA and other biological specimens by US census categories have become one acceptable norm for many in the genome sciences. How do scientists grapple with questions of "best practices" on these issues when common health disparities, such as prostate cancer, disproportionately affect US minorities? How, and under what conditions, are social categories of identity effective for sifting through biogenetic differences characteristic of the human genome? Finally, how do members of minority groups and concerned citizens of the lay public who are targeted for genetic studies help to shape, revise, or contest genetic uses of racial ascription? The answers to these questions are of increasing relevance to public understandings of science. This study employs extensive observational analyses and interviews with both geneticists and members of the lay public to chronicle how the societal and scientific expansion of genetic research on human variation influences key areas of social life. These areas include biomedicine (through disease risk mapping), law (through forensic DNA database building), and personhood (through identity markers framed as "ancestry"). One related question that this ethnographic study will begin to answer is how members of the public may or may not feel comfortable with the myriad potential uses to which their DNA can be put. A related major component of this social scientific study will focus on the ethical practices of research scientists who are mindful of the importance of diverse medical inclusion for biological and social reasons, while also having a personal commitment to empower and represent research subjects who are members of diverse communities. Appeals to advance genetics for conditions that disproportionately affect African-Americans, in one lab, and injunctions to support new technological feats of personalized genomics, in another, are compared as lead geneticists' personal articulations of their goals merge with perceived societal needs. This research also investigates how such work by geneticists may pose new concerns and constraints for the research participation of certain social groups.