Cracking Open Genetic Privacy

GINA

GINA prohibits discrimination on the basis of genetic information (including both family history and genetic test results) in health insurance coverage and employment, creating tighter restrictions on the collection and use of genetic data than those in place for other types of medical information. Health insurers cannot request or require genetic information as a condition of coverage or use it to determine rates or to discover preexisting conditions.

Employers cannot hire, fire, promote, or alter terms of employment based on a person’s genetic profile. GINA does not protect privacy per se but protects our interest in insurability and employment by restricting what sorts of decisions can be made on the basis of genetic data. It protects us from harmful discrimination. GINA explicitly exempts life insurance, disability insurance, and long-term care insurance from such restriction.

GINA considers privacy not so much as an abstract principle, but as a contextualized, lived reality, i.e., genetic information is information of a different sort and ethically warrants a different set of limits. Privacy functions differently in different contexts and should be governed by the values and norms of the context at hand. Healthcare relies on access to information—deeply personal information—to effect successful research and treatment. Protecting privacy in the medical context is not tantamount to building a firewall but involves assuring informed consent, managing expectations, and protecting trust.

taken here