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Here's GINA

By Ricki Lewis

The human genetics community is eagerly awaiting imminent passage of the Genetic Information Nondiscrimination Act in the Senate. The law, in the works since 1995, prohibits health insurance companies and employers from using private genetic information in coverage and hiring decisions; from requiring genetic screens or tests; and from collecting such information without consent.

If the bill passes, it will add to the meaning of April 25. The date is already designated National DNA Day in honor of the publication of Watson and Crick’s famous DNA paper in 1953 and the unveiling of the official human genome sequence half a century later. Last year on DNA Day, the House passed GINA.

With the law’s passage, no longer will a woman feel compelled to take a BRCA test under an assumed name and pay out of pocket to keep her medical record clean. Nor will a person need fear repercussions of taking a test for an inherited neurological disease that will not produce symptoms for at least a decade. With web-based companies already offering direct-to-consumer tests (for health, ancestry, and paternity) and individual whole genome sequencing possible, if not practical, it is only a matter of time before genetic information becomes a standard part of everyone’s health history and medical records. GINA will protect against abuse of that personal information. Many states already have such legislation.

GINA will actually directly protect against a disease -- genetic determinism. Our genes do not dictate who we are. We all owe thanks to the hundreds of professional and patient advocacy organizations and thousands of families with inherited disorders that made GINA possible.

Ricki Lewis is the author of the novel Stem Cell Symphony and the textbook Human Genetics: Concepts and Applications, now in its 8th edition. She is a fellow of the Alden March Bioethics Institute.