What is GINA?

The Genetic Information Nondisclosure Act of 1998 (“GINA”) deals with the use of genetic information in insurance and employment.  Prior to GINA, there was a fear that, as doctors make increasing use of a patient’s genetic information in the diagnosis and treatment of disease, insurers and employers would make increasing use of such information for less legitimate reasons.  The concern was that an insurer might learn that you have a genetic predisposition to cancer, for example, and on that basis, might decline coverage or charge an extra premium.  In the employment context, the concern was that an employer might discriminate against someone who was predisposed to a condition on the rationale that the investment in the employee would be better placed in someone without such a predisposition.

GINA was enacted on an “unanimous-except-for-Ron-Paul” basis to prevent such conduct.  Under GINA, insurers are prohibited from rating or denying coverage for a currently-healthy person based on a predisposition to some future disease.  The law also prohibits employers from making employment decisions based on genetic information.

One important practical point from GINA: employers who have any reason to request or examine medical records of their employees should go out of their way to make sure that any genetic information is not included in such records.  The easiest way for an employer to avoid a charge of discrimination is to never have access to the genetic information in the first place.

Proponents of the bill claim that GINA will make patients and doctors feel more safe about exploring the human genome and engaging in genetic testing for the advancement of medicine, without having to worry about potential misuse of the information.

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