In February 2000, President Clinton signed an executive order prohibiting genetic discrimination in the workplace. Despite this, federal employers were still allowed to conduct genetic testing for occupational surveillance and other human research uses.
In 2008, the Genetic Information Nondiscrimination Act (GINA) extended the protections executive order to the general public, as well as to health insurance. Now, more than a decade after GINA, the National Aeronautics and Space Administration (NASA) is beginning to utilize genomics as a way to better understand and lessen the health consequences of space travel. For NASA, the challenge lies in upholding ethical and legal obligations concerning each astronaut whose genetic information the administration collects.
For a group like NASA, the parameters outlined by GINA present a categorization issue. While NASA is an employer, it is also a primary care provider for active astronauts and performs occupational health surveillance and wellness promotion for its employees. Since it is responsible for employees’ well-being, it is important for NASA to understand the hazards posed to its astronaut corps in order to appropriately train and prepare them. Under GINA, NASA is permitted to collect genetic information as part of providing clinical care and occupational protection and conducting research. However, there are some unique circumstances faced by NASA that may complicate data collection and use.
For example, the prospect of manned missions to Mars — a 2-year trip — means that NASA must collect genomic data in order to address potential health issues before they crop up. Since the Equal Employment Opportunity Commission federal regulations state that GINA does not limit the authority of a federal department or agency to conduct occupational or health research, this data collection is in line with current regulations.
However, NASA’s situation presents unique challenges that do not have an impact on other employers. Astronauts face issues with maintaining the confidentiality of their data since there are so few of them and they are frequently in the public eye. A recent example of this is the Twins Study, a program that used personalized medicine techniques to discover individual responses to long-term exposure in space by comparing the molecular profile of a pair of identical twins. Scott and Mark Kelly, a current and a former astronaut, participated in a series of 10 studies that attempted to link genetic data at the molecular level to whole-body and brain function. In acknowledgement of the public nature of their employees and work, NASA has restrictions on how the genetic information they gather is used and shared. However, because of the small sample size and the public identities of the subjects, NASA’s ability to protect data from improper use could not be determined.
The inability to determine NASA’s ability to protect data raises the issue of astronauts not being able to opt out of occupational surveillance. GINA allows employers to collect genetic information to monitor the effects of toxic substances in the workplace, which astronauts are potentially constantly exposed to in space. Since there are so few astronauts, NASA would, by definition, have access to data from individually identifiable astronauts. And because an individual’s genetic information must be matched to their individual exposures in the case of astronauts, there is no way for NASA to make use of aggregated data in identifying health risks from exposures to hazards in spaceflight.
The individual data that is collected could, however, be critically useful to NASA. General medication safety and efficacy is highly variable in patients in space, with the European Space Agency recently citing that roughly one-third of response to drugs available on the International Space Station is affected by polymorphic metabolizing enzymes. This suggests that the collection of individuals’ data could lead to a more effective pharmacy for future missions. Reasons such as this are why it is important for NASA to collect genetic data for clinical purposes. In line with GINA, NASA is entitled to collect genetic information for use in improving the health of its astronaut employees, as well as for research to ensure the health of future astronauts.
Antonsen EL, Davis Reed R. Should NASA collect astronauts’ genetic information for occupational surveillance and research? AMA J Ethics. 2018;20(9):E849-856.