GINA SUMMARY
This act was passed in May 2008 in order to prevent discrimination by health plan providers or employers based on genetic information. Specifically, it prevents these parties from requiring genetic testing, and prohibits determining premiums, eligibility for insurance, or employment based on genetic information. This is good news for PKU advocates. It helps allay public fears of routine testing (fear that “Big Brother” will have, and use, the information against them). It may be a boon to research as well, since such public fears could have dampened enthusiasm for research.

There remain two reservations about GINA. First, we lack assurance that the measure will apply to information obtained before GINA, rather than only to that information obtained from that point onward. Second, the definition of “genetic information” is not very specific. We presume that it will include not only specific gene sequences, but also their manifestations. Otherwise it is easy to imagine an employer saying “We didn’t discriminate based on your gene sequence. We were only acting based on you amino acid levels.” Neither of these issues with GINA appears to have been specifically tested yet, and they may in the future present an opportunity for advocacy.