GINA 2.0

Heralded as the first civil rights legislation of the 21st century, the Genetic Information Nondiscrimination Act (GINA) provides landmark protections against discrimination based on one’s genetic make-up, both in the workplace and in health insurance. Combining its protections with those afforded by HIPAA, the Americans with Disabilities Act, the Affordable Care Act and other laws, many might say that genetic information is more protected than any other type of health information today.

Some advocates are strategizing GINA 2.0, legislation to extend these protections to life insurance, disability insurance and long-term care insurance. HHS believes it has the authority through HIPAA’s privacy rule to extend GINA’s protections to long-term care insurance. However in the final rule, the department chose to hold off citing the need for further data about potential harms to the industry. The underwriting process for these forms of insurance is very different than for health insurance and GINA may have very different implications, leading to quite an uphill process to pass subsequent legislation. A better strategy might be to pick lower hanging fruit that could have an immediate impact on the public.

While cases of discrimination were not pervasive during and after the decoding of the human genome, the crippling fear of genetic discrimination led to the effort to enact GINA. Patients declined potentially life-saving genetic tests, avoided participating in clinical trials and withheld critical information from their doctors to avoid the inclusion of it in their medical records . After languishing in Congress for more than a decade, Congress overwhelmingly passed GINA in 2008, thinking this legislation would allay public fears. Unfortunately, it persists.

In 2011, Cogent, a market research firm, reported that approximately 71 percent of respondents cited concerns that health insurance companies would access their information without permission, and more than half are extremely concerned about this privacy violation. More disconcerting perhaps is the fact that 81 percent of physicians surveyed said they were not familiar with GINA’s protections and only 16 percent of Americans are aware of laws that protect the privacy of their genetic information.

As the genetic privacy community ponders GINA 2.0, it’s imperative that they address what I view to be a major weakness in GINA, one even greater than it not applying to other forms of insurance: Patients and doctors don’t know about its protections. What good is a civil rights bill if the public still feels at risk for discrimination? Stakeholders need to advocate for programs to educate the public about these very important protections, encourage patients not to fear genetic testing and tell them what to do when they experience genetic discrimination. It took more than a decade to pass GINA. I hope that by the time Cogent reports its 2012 survey data, those numbers look very different.

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