May 2018 marks the
tenth anniversary of the passage of the Genetic Information Nondiscrimination
Act (GINA). The law prohibits covered health insurers and employers from
discriminating against individuals based on genetic information. When the bill
first passed, proponents heralded it as the “first civil rights bill of the
twentieth century”. Others, however, decried the bill saying that it was an
unnecessary piece of legislation that was a “solution in search of a problem.”
Since that time, the debate over the necessity and merits of GINA has
continued. Additionally, the technological, political, and legal landscape
surrounding genetic testing, insurance, and employment has changed. After ten
years, how has GINA fared through the changing scientific and regulatory
framework? This panel explores how GINA has played out in practice, from its
effects on public fear of genetic discrimination to cases brought under the
law. The panel will focus on legislative efforts to whittle away some of the
bill's protections, such as proposed wellness program legislation, as well as
state passed or proposed legislation to fill several gaps in GINA. Finally, the
panel will offer predictions regarding the law’s future impact and insights
regarding how its protections could be strengthened and improved.
Papers from this program will
be published in Journal of Law and the
Biosciences.