Are America’s Terrible Genetic Privacy Laws Hurting Science?

Are America’s Terrible Genetic Privacy Laws Hurting Science?

As companies like 23andMe and help make genetic testing commonplace, you would think that people would become better at ensuring protections for the privacy of that data. Instead, multiple Congressional actions in the US threaten to erode already-weak protections against genetic discrimination. But it isn’t just a dystopian Gattaca future where citizens are discriminated against based on their genes that we need to be worried about — one researcher is concerned that our inadequate genetic privacy laws will stymie science.

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“It’s inhibiting both clinical care and research,” Robert Green, a medical geneticist at Harvard Medical School, told Gizmodo.

Green’s work focuses on how genomic medicine impacts people’s health and behaviour. One thing he’s particularly interested in is what makes people inclined to say yes to a genetic test. And he’s observed one particularly big reason why people seem to be saying no: Fears of genetic discrimination.

For Green and other geneticists, that makes their work harder to do — research to, say, track how a particular gene affects a certain condition requires thousands of people to undergo genome sequencing, and the harder it is to attract those numbers, the longer it takes to do the work. Ultimately, this could mean treatments taking more time to get to patients.

But fears of genetic discrimination could also impact the health of those patients directly, if they refuse testing that could help doctors treat them.

“People are concerned that if they find they’re carrying a risky gene and it goes into their medical record, it will have a bad impact in some way,” Green said. “Which they should be.”

In 2008, Congress passed the Genetic Information and Nondiscrimination Act (or GINA) to prohibit health insurers and employers from either requiring genetic testing or using it in making decisions about things like deductibles. The protections of GINA already do not apply to life insurance, long-term care or disability insurance, meaning those companies are free to ask for genetic information and reject people deemed too risky. The Affordable Care Act, now in the midst of being replaced, solved another problem with GINA, protecting against discrimination for preexisting conditions revealed via genetic tests. Another bill, HR1313, currently under review in the House, would allow employers to request that employees undergo genetic testing, with the risk of paying hefty fines if they refuse.

“We’re injecting terrible opportunities for discrimination into the workplace,” Green said.

Green has just started looking at how this impacts health care and research outcomes. In one project, early data suggests the impact may be significant.

As part of a major NIH-funded study looking at how genetic sequencing of infants impact health care, Green and his colleagues offered the parents of more than 2500 newborns free genetic sequencing for their child. Of those, parents of 325 newborns agreed to attend an information session. Only 57 wound up participating.

Green’s group is continuing to research why parents say yes or no to genetic testing. So far, Green tells Gizmodo, his investigation has revealed that privacy concerns play a role, possible a major one.

“People decline genetic tests because of concerns over privacy and genetic discrimination, especially insurance discrimination,” he said. “This is stymieing biomedical research and people’s access to healthcare.”

While many are frustrated by inadequate genetic privacy protections, insurers and employers argue that there’s a business reason for revealing genetic information. With more information on the risks of covering patients, insurers might be able to offer a more affordable, efficient product.

Green said that the UK offers a good example of how the US might approach its problem. There, insurers and the government have reached an agreement that both guarantees the right to insurance, and the rights of insurers to access information that may impact risk. The agreement states that insurers must establish a higher bar than typical when basing risk assessment on genetic testing data. In other words, they can’t see that you’re a carrier for a gene that might lead you to develop a disease, and immediately treat that gene as a preexisting condition. It also ensures consumers can’t be pressured into taking a test, that tests taken in the course of medical research are exempt from being shared with insurers, and that people can’t be asked to share the genetic testing information of relatives.

“There are ways can we satisfy business needs of companies and also satisfy the privacy of consumers,” Green said. “But right now, we in the genetics community are actually aghast.”