By Bryan Helwig, PhD
A military segregated by genetics? The possibility is more reality than science fiction and an issue I encountered while leading a research team for the Department of Defense. Recent advances in science and technology have produced genetic tests that are low cost, easily performed and able to produce significant amounts of genetic information about individuals. Once confined only to scientific experiments, the general public now has options to trace their family origins from a cheek swab, detect genetic abnormalities prior to birth from a sample of the mother’s blood, and determine their genetic profile using saliva.
Since the mid-1990s the Department of Defense has required that all new recruits provide a DNA sample that can be used for identification purposes. Now, advances in genetic technology are helping to identify genes profiles associated with a predisposition to post-traumatic stress disorder (PTSD) or suicide. The use of genetic testing in this manner is considered predictive genetic testing.
Proponents of predictive genetic testing in the military note the invaluable role testing provides in keeping armed forces safe. Critics contend that mandatory genetic testing is an invasion of privacy and a violation of civil liberties. These individuals contend that the Genetic Information Nondiscrimination Act (GINA) of 2008, which protects civilians from job-related discrimination based on genetic test results, should also apply to military personnel. Specifically, §202 and §203 prohibit employment discrimination practices based on genetic information. With few exceptions, §203 reads “it shall be an unlawful employment practice for an employer to request, require, or purchase genetic information with respect to an employee or a family member of the employee . . . “ However, the military is a unique environment in which the needs of the unit are a higher priority than those of the individual, complicating the application of civilian policies such as GINA to members of the armed forces.
Military duty is characterized by physical demands and exposure to environments that are unpredictable and often extreme. As a result, work in military environments can result in manifestation of genetic abnormalities that would remain unknown without diagnostic genetic testing in which screening occurs for specific genes that are diagnostic for a condition.
During the last five years, the expansion of genetic testing has been proposed. An advisory panel of independent scientists produced the JASON report in 2010 recommending “The DoD should establish policies that result in the collection of genotype and phenotype data, the application of bioinformatics tools to support the health and effectiveness of military personnel, and the resolution of ethical and social issues that arise from these activities.” The idea is robust and one I frequently encountered during my career directing a Biomedical Research Laboratory for the Department of Defense.
The focus of my team’s work was to better understand how and why the human body responds in extreme environments. For instance, the expression of a subset of genes allows for adaptation to high altitude, low-oxygen environments such as the mountains. Although not as well established, a similar set of genes also may be advantageous to prolonged work in hot and cold environments. Thus, predictive genetic screening in the military could be used to identity individuals that would have advantageous or disadvantageous physiological responses to hot, cold or high-altitude environments. In addition, the JASON report proposes the use of predictive genetic testing to identify service members at increased risk of blood coagulation abnormalities, bone fracture risk, tolerance to sleep deprivation and over two hundred other health-related phenotypes of interest to the military.
Although not widely recognized, each of us undergoes a diagnostic genetic test at birth for phenylketonuria, more commonly known as PKU, an inborn error of protein metabolism that can have profound negative affects on development if not identified early in life. In comparison, the use of predictive genetic screening is in its infancy. Genetic tests are highly accurate in quantifying gene expression, however use of the results in a predictive capacity is less accurate and often over-exaggerated by the media.
For instance, a genetic profile that affords natural protection in a hot environment is likely to be comprised of up and down regulation of hundreds or even thousands of genes. Some genes may be affected by health status, nutrition, sleep, etc. Thus, the use of predictive genetic testing requires identification of stable gene profiles that serve as accurate predictors of health status and only change expression in the environment being studied. Additionally, many scientists cite a two-fold change in gene expression as significant. However, a two-fold change is arbitrary and not always indicative of a significant physiological impact. Despite rapid expansion of genomic technology, the reliability of predictive gene profiling remains nascent.
Despite the scientific gaps, legal and ethical issues need to be addressed before genetic testing achieves an accuracy allowing its use en masse. Initial efforts should focus on privacy, including modification of GINA to protect privacy of military members in a way that is similar to the general public. Secondly, if GINA cannot be modified, discussions regarding new policies associated with predictive genomic testing that address the intersection of military personnel privacy and mission readiness should be encouraged. Instrumental will be deciding how broadly predictive genetic testing should be used by the Department of Defense. Conversations must also include updated policies regarding the handling or even destruction of DNA samples and specimens after military service ends and related rules for governing the almost fifty million samples in the Department of Defense Serum Repository (DoDSR). Such policy decisions should be balanced with the knowledge that the DoDSR is the largest repository of samples in the world and its use in understanding disease has been substantial.
Some service members refused to provide DNA for inclusion in the DoDSR and the punishment was harsh, including court martial, a reduction in rank and loss of pay. The Hawaii District Court held that requiring DNA samples from service members does not violate the Fourth Amendment right to be free from unreasonable searches [Mayfield v. Dalton, 901 F. Supp. 300 (D. Haw. 1995), vacated as moot, 109 F. 3d 1423 (9th Cir. 1997)]. Objection to inclusion may become more common if predictive genetic testing is used without privacy protection. The military must revisit the thin red line between privacy and military needs; a line that currently favors minimizing individual needs.
Standard informed consent required whenever biological samples are obtained must also be re-evaluated to better reflect the current practices. Informed consent forms should be re-written, allowing the service member to give different levels of permission regarding future use of their DNA beyond the required baseline diagnostic screening and identification purposes. Importantly, this option must be revocable at any time, during or after their military career. The military should also consider the alternative of an external third party to perform predictive genetic screening, the results remaining private, and released only as required by strict criteria. Regardless of the results, policies must be in place to prevent discriminatory practices related to genetic results in military and post-military career advancement.
The military benefit to the Warfighter from genetic testing is significant and, if used responsibly, can help protect a soldier’s health. However, many ethical and legal hurdles exist that must be resolved before predictive genetic testing becomes mainstream. Conversations addressing such issues need to occur now; the issues are central to protecting the privacy of those who keep us safe.
Bryan Helwig, PhD is a first-year law student at Chicago-Kent College of Law (Class of 2017) with an interest in the intersection of intellectual property, genetics and privacy. During the five years preceding law school he directed a Biomedical Research Lab for the Department of Defense.