Wishes left un-granted by the GINA in the bottle
The 2008 Genetic Information Non-Discrimination Act (GINA) sought to allay concerns that individuals’ genetic information could and would be used to discriminate against them in health insurance and employment contexts. Addressing those concerns was meant to ensure that individuals would continue to receive genetic testing in both clinical and research settings. Given the emphasis on promoting genetic research via GINA—seen in Congressional hearings, opinion pieces, and within the legislation itself—it is worth asking whether GINA truly protects research participants from genetic discrimination and thus promotes research.
Based on literature review, legal and historical analysis, and qualitative document coding of state statutes and federal protections, it is clear that GINA did not protect or promote research as much as legislators seemingly intended. GINA falls short in two ways. First, GINA is not well known among the public. Therefore, the protections it offers rarely impact an individual’s decision to participate in research or their worries about genetic discrimination. Second, GINA does not ensure nondiscrimination in a number of contexts. For example, GINA does not apply to the life insurance industry, to financial institutions like banks, and potentially to non-clinical research (which characterizes much of the research at TGen). The lack of coverage in those areas not only leaves research participants unprotected, but it may also discourage their participation in research. However, the lackluster protections offered by the government can be augmented by research institutions, like TGen, who can take steps to mitigate the risk that research data will fall into the wrong hands or, if it does, be connected to a particular individual.