Watch an interview with Dr. Francis Collins on the Genetic Information Nondiscrimination Act of 2008 (GINA) produced by the New England Journal of Medicine.
Dr. Collins is the Director of the National Human Genome Research Institute (NHGRI).
Dr. Collins also wrote a Perspective for the New England Journal on June 19, 2008 with Dr. Kathy Hudson and M.K. Holohan: Keeping Pace with the Times — The Genetic Non-Discrimination Act of 2008.
Almost 15 years ago, in1995 Dr. Hudson and Dr. Collins wrote an article for Science where they outlined the need for legislation to address insurance discrimination based on genetic tests and family information. In that article — Genetic Discrimination and Health Insurance: An Urgent Need for Reform — they said,
In addition to the real and potentially devastating consequences of being denied health insurance, the fear of discrimination has other undesirable effects. People may be unwilling to participate in research and to share information about their genetic status with their health care providers or family members because of concern about misuse of this information. As genetic research progresses, and preventive and treatment strategies are developed, it will be increasingly important that discrimination and the fear of discrimination not be a roadblock to reaping the benefits.
President George W. Bush signed the Genetic Information Nondiscrimination Act on May 21, 2008.