The impact of Genetic Nondiscrimination legislation on progress in genetics and personalized medicine
Personalized Medicine
Personalized medicine looks at lifestyle, genetic, diet and environmental factors that influence a person’s wellness. It relies on basic genetic research to provide insight into how genes influence health and which genetic abnormalities cause disease.
There are several hurdles facing progress in personalized medicine today.
- Lack of health information technology infrastructure
- Lack of a national biobank
- Gaps in federal oversight of genetic testing
Each of these obstacles contains a privacy aspect that has been overcome, at least in part, by the passage of the Genetic Information Nondiscrimination Act.
GINA and Personalized Medicine
Passage of the Genetic Information Nondiscrimination Act (GINA) was important to stakeholders in research. The possibility of genetic discrimination hindered progress in personalized medicine by hobbling basic research into the genetic aspects of disease.
- Concerns that employers and health insurers would have access to the results of genetic tests kept people from asking their physicians for those tests. The result is inability to predict and prevent diseases.
- Fear that genetic information from participation in research studies would fall into the hands of employers and health insurers kept people from enrolling in genetic research studies.
GINA was introduced in Congress in 1995. After several stalls, the Coalition for Genetic Fairness formed in 1997 to help educate policymakers and public and private stakeholders about the impact that the fear of discrimination was having on basic research. Research!America is a member of the Coalition.
The passage of GINA on May 21, 2008 overcame the barriers to personalized medicine. Thanks to GINA, genetic information cannot form the basis of health insurance underwriting decisions nor can it be used to make hiring, firing, and promotion selections in the employment sector. Forbidding health insurers and employers from using genetic information means that health IT privacy concerns also dwindle, as do similar concerns about biobanks.