As a new member of FOSEP, I’ve been thinking about writing about this topic for awhile, but felt nervous about getting my feet wet with the blog. I’m sorry if this rambles a little.
I’m a graduate student in Public Health Genetics, and am interested in the ways information about our genome can be used to improve health, and how the information is understood (or not) by our society. I am particularly interested in working with those who have decided to Serve in the military (in some ways, we could talk about them as the other 1% of those who consistently serve- see http://www.pewsocialtrends.org/2011/11/23/the-military-civilian-gap-fewer-family-connections/) , so I became especially intrigued when colleagues pointed out a 2010 report produced by the JASONs, a group of scientists that advise the Department of Defense, or DoD, (see http://www.fas.org/irp/agency/dod/jason/ for unclassified studies) about how / if Genetic Databases could be used by the DoD called the $100 Genome: Implications for the DoD: (www.fas.org/irp/agency/dod/jason/hundred.pdf) and a Nature Reviews Genetics Report in Response to it (http://www.nature.com/nrg/journal/v12/n9/full/nrg3063.html). The report focuses on how genome sequencing, once cost prohibitive, is reaching the point where it is more expensive to store and analyze the information than to obtain it.
This report stands out to me for a few reasons – first it is written in language that I think is accessible to most educated adults (even the 2nd/ 3rd generation sequencing technology information), and second that it offers policy advice with clear ideas about the usefulness of genetic information to the DoD, including specific research into “phenotypes of interest”. It also focuses on specific topics relevant to our military, particularly emphasized by the line that “offensive and defensive military operations may be impacted by the applications of personal genomics technologies through enhancement of the health, readiness, and performance of military personnel…” While this may be “overselling” the power of genetic information and genetic contribution to disease or traits, it also shows the unique ways that this information could be useful to our government.
These statements bring up reservations to some extent in my mind; I think of the “military industrial complex”, “big brother” or “super soldiers”/Captain America (which is what people bring up when I talk to them about the DoD’s possible foray into genomics). However, I also thought of the many technological and scientific advances that have been brought about through DoD research developed first for the military and later for civilian use like the Internet and GPS, and it got me thinking of the opportunities this also presents. Many of our current genetic databases are heavily skewed towards whites, and probably those with more disposable income, especially those who are using direct to consumer genetic companies. Having more genetic and environmental data all in one source within a potentially a more diverse population is certainly intriguing to me as a Public Health researcher.
Of course, there are also policy and ethics implications. What might the DoD want to do with genetic information? In particular the report mentions possibly finding genetic connections with phenotypes that might affect force readiness such as PTSD, effects of sleep or water deprivation, climate extremes, and wound healing. While the report cautions that any connections between genes and phenotypes would need to be validated in multiple population before any specific policy using the information would be followed, it still got me thinking about the implications.
The DoD is not covered under the 2008 Genetic Information Non-Discrimination Act (GINA) which prevents employers or healthcare providers from using genetic information for discriminatory acts. Could information from a genetic test developed from sequencing be used to deny a person a position in the Combat Arms (e.g. the Infantry or Special Forces which in the Army leads to promotion and higher pay) or to exclude people from these positions all together? Could it be used to confirm a diagnosis (for example PTSD), and by implication to infer or deny medical benefits? How much of the information will be shared with other researchers, and how might it be kept private? Could it eventually become part of the electronic medical record?
The DoD is already using genetic information for identification purposes (mostly if there are remains that need to be identified) as well as for screening. The military screens for conditions that had previously resulted in deaths of troops in the field or during training(such as sickle cell and glucose 6 phosphate dehydrogenase deficiency). However, the military has also been responsive to these deaths and has changed some of its training policies to reduce risk, emphasizing water breaks, and paying attention to physical limits so that the force is ready willing and able, and people aren’t dropping from exhaustion, so maybe those genetic tests aren’t as useful.
While the $100 genome isn’t here, and so far as I am aware the DoD is not starting to collect genome sequence information on its active duty personnel, the Veterans Administration (VA) has started a massive new project, the Million Veterans Project, looking at genotype and phenotype data (http://www.research.va.gov/mvp/). Unlike the DoD, the VA is covered under GINA, so some of the possible questions brought up from the research might be different, especially as regards to healthcare and genetic information. I think it is a great opportunity for research, and to be able to make connections between genotype and phenotype in a way we might not have had before in a population that may not have benefited from the research before, but of course I also acknowledge some of the ethical, legal, and social implications the proposed project could bring.