Why we need safeguards against genetic discrimination

A couple of years ago, I spat into a little plastic tube, stuck it in the post, and waited for a company to analyze markers on my DNA to estimate how biologically old I am. It’s not the first time I’ve shared my genetic data for a story. Over a decade ago, I shared a DNA sample with a company that promised to tell me about my ancestry.

Of course, I’m not the only one. Tens of millions of people have shipped their DNA off to companies offering to reveal clues about their customers’ health or ancestry, or even to generate tailored diet or exercise advice. And then there are all the people who have had genetic tests as part of their clinical care, under a doctor’s supervision. Add it all together, and there’s a hell of a lot of genetic data out there.

It isn’t always clear how secure this data is, or who might end up getting their hands on it—and how that information might affect people’s lives. I don’t want my insurance provider or my employer to make decisions about my future on the basis of my genetic test results, for example. Scientists, ethicists and legal scholars aren’t clear on the matter either. They are still getting to grips with what genetic discrimination entails—and how we can defend against it.

If we’re going to protect ourselves from genetic discrimination, we first have to figure out what it is. Unfortunately, no one has a good handle on how widespread it is, says Yann Joly, director of the Centre of Genomics and Policy at McGill University in Quebec. And that’s partly because scientists keep defining it in different ways. In a paper published last month, Joly and his colleagues listed 12 different definitions that have been used in various studies since the 1990s. So what is it?

“I see genetic discrimination as a child of eugenics practices,” says Joly. Modern eugenics, which took off in the late 19th century, was all about limiting the ability of some people to pass on their genes to future generations. Those who were considered “feeble minded” or “mentally defective” could be flung into institutions, isolated from the rest of the population, and forced or coerced into having procedures that left them unable to have children. Disturbingly, some of these practices have endured. In the fiscal years 2005-2006 and 2012-2013, 144 women in California’s prisons were sterilized—many without informed consent.

These cases are thankfully rare. In recent years, ethicists and policymakers have been more worried about the potential misuse of genetic data by health-care and insurance providers. There have been instances in which people have been refused health insurance or life insurance on the basis of a genetic result, such as one that predicts the onset of Huntington’s disease. (In the UK, where I live, life insurance providers are not meant to ask for a genetic test or use the results of one—unless the person has tested positive for Huntington’s.)

Joly is collecting reports of suspected discrimination in his role at the Genetic Discrimination Observatory, a network of researchers working on the issue. He tells me that i