A secretive group of independent, influential scientists who advise the United States government on science and technology recently released The $100 Genome: Implications for the DoD. Perhaps unsurprisingly, it pays little attention to the larger social and ethical questions raised by such technology.
The group, known as the Jasons, was asked to consider the impact of personal genomics over the next decade and to assess the opportunities and challenges of the field for the Department of Defense (DoD). The report concluded with the following recommendations:
- Establish procedures for the collection and archiving from all military personnel DNA samples that are compatible with subsequent genotype determination.
- Plan for the eventual collection of complete human genome sequence data from all military personnel.
- Arrange for the secure, long-term storage of DNA sequence data.
- Prepare for the collection of epigenome and microbiome data when appropriate.
- Determine which phenotypes are of greatest relevance to the DoD.
- Cooperate with health care professionals to collect and store these data.
- Use bioinformatics tools to correlate genetic information with phenotypes to discover linkages between the two datasets that will ultimately allow genotype information to be used productively.
Some critics have begun to raise important concerns about the recommendations. Secrecy News and The Huffington Post both ran articles (1,2,3) raising a number of concerns regarding privacy, exploitation, discrimination, and eugenics.
Steven Aftergood of Secrecy News writes:
What could possibly go wrong? Quite a few things, actually. Besides the risk of failing to maintain the privacy and security of genetic data, the data could be used in unethical ways or their significance could be misinterpreted. ... Acting on genotype information that is not convincingly linked to specific phenotypes could lead to erroneous and detrimental decision making.
Aftergood, quoted in The Huffington Post, also discussed privacy concerns and exploitation:
Questions about control and exploitation quickly become front and center ... I think all of us should be concerned about the advancing state of genetic research and its susceptibility to improper or thoughtless use.
It lends itself to corporate control and for-profit exploitation of genetic data, which is the most intimately private information there could possibly be. Your genetic code is more private and more unique to you than anything else in the universe.
Unfortunately, soldiers are particularly susceptible to harms relating to release of their DNA because they are excluded from the Genetic Information Nondiscrimination Act (GINA).
While the report does acknowledge the need for "resolution of ethical and social issues that arise from these activities," it fails to do much more beyond this in thinking about potential implications of gathering DNA from soldiers. A spokesperson from the Pentagon says that it is seeking input from others on the issue. But Ann Finkbeiner, author of a book on the Jasons, suggests that they are highly influential: "My feel for the track record is that they are taken very seriously ... and I think a lot of their ideas sort of end up in programs."