Does a genomics that does not work for some mean a genomics that will not work for all?
This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Jenny Reardon, Department of Sociology and Center of Biomolecular Science and Engineering at UC Santa Cruz, and Stephanie M. Fullerton, Department of Bioethics and Humanities at the University of Washington.
The future promise of personalized medicine rests precariously on the care with which we pursue genomic research in the current moment. While a focus on legal protections and open access are important, we must also attend to fundamental questions about the constitution of human diversity at the genomic and social level.
This is clearly evident in the recent collision of open source genomics with privacy rights. While calls for unfettered data sharing have formed the ground for much biomedical research, the achievement of a genomic commons may create its own kind of blockages. For example, although it is finally against the law to use genomic information to discriminate in healthcare or employment, the Genetic Information Non-Discrimination Act does not protect against misuses related to long term care coverage, life insurance, membership in federally-recognized groups, or immigration. For these and related reasons many people remain wary of involvement in genomic research. “Open access,” in other words, may inadvertently close the door for many.
Does this form of genomics, one that may not work for some, mean a genomics that will not work for all? Answering this question requires addressing questions about the ordering of human beings that are at once scientific and social. Scientifically, the limited ability of GWAS to explain trait variation has called into question the predominant role of common variation in disease risk. This has placed a renewed premium on the identification of rare variants. Only significant effort will achieve the participation of the broader and more diverse range of human beings required for such research. Understanding why some people participate, and many do not, will demand understanding the specific ways in which genomic ideas and practices form from and re-form social practices of racism and inequality–issues that remain with us despite the last decade of proclamations about the anti-racist and equalitarian features of genomics.
If the subjects of genomic research remain primarily those categorized as “white” or “European,” and those who have the means to afford genetic testing, then genomics will fall short of its goals to be a human science that meets human needs. To avoid this future requires that scientists more carefully attend and respond to questions about the ordering of nature and society that their field poses.