GENETIC tests are becoming increasingly fashionable, and it’s easy to see why: they allow people to find out all kinds of things about themselves, from their family’s origin to the likelihood of developing certain diseases and passing on those risks to their children. But there’s a flip side: discovering you are susceptible to an illness for which there is no effective cure or treatment can be devastating. There’s also the possibility that your genetic data will find its way into the wrong hands and be used against you.
My parents, husband and I had to confront these issues earlier this year when we received the results of our genetic tests from , a direct-to-consumer genomics company based in Mountain View, California. We had requested the company’s at-home DNA-sampling kits largely in the spirit of research and self-discovery (my mother is a biologist, my father a lawyer and my husband a geneticist).
23andMe found nothing particularly worrisome. The highest disease risks for me and my parents were dyslexia and psoriasis, and for my husband lactose intolerance and venous thrombosis. who had chosen to convert or hide their past.
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What surprised me most was what happened next. We enthusiastically offered to share our results online with other 23andMe customers, something all may do if they wish – at either a basic level, showing only minimal ancestry results, or an “extended” level, showing ancestry, physical traits and disease risks. Yet most refused to share with us beyond the basic level, apparently fearing the consequences of making parts of their genetic data public. Some were even keeping their 23andMe results from their doctors.
Are they right to be so worried about privacy? Some caution is understandable. If health-related genetic information is out there, employers and insurers could feasibly discover it and use it (though this is illegal almost everywhere). Disclosure of test results can affect your family: inferences can be made about the genetic predispositions of your siblings, children and parents. And testing can expose awkward secrets – by revealing non-paternity, for example.
Privacy campaigners and legal experts have come up with several proposals to protect against such risks. One, known as “genetic exceptionalism”, affords genetic information special sensitivity not given to other kinds of health data. For example, the UK and Canada have taken steps to protect individuals by giving them the option of deleting sensitive genetic information from their medical records, and in the US, the bars health insurers from denying an individual coverage or charging higher premiums based on genetic predisposition to diseases. Another idea is to designate genetic data as legally protected property. That way, if someone steals it you can sue, and if you choose to sell it you reap the financial benefits.
Yet much of our concern about the abuse of personal genetic data seems overblown. It betrays a fundamental delusion of self-importance: we assume that someone will find our individual genome interesting enough to hack into it and exploit it. In most cases, this would be a waste of time: our genetic secrets are rarely worth the cost of obtaining them clandestinely.
A more radical approach – and one likely to appal the privacy advocates – is to throw off the shackles of privacy protection altogether. This is the line followed by Harvard Medical School’s , which aims to make personal genome sequencing more affordable and accessible. The PGP obliges those who choose to participate to make their genetic data and other personal information available to researchers and the public.
This includes not only genomic sequences, but also medical histories and phenotypic information – invisible traits such as bitter-tasting ability, visible traits such as handedness, and demographic data such as age. Though PGP volunteers can have their data “de-identified” – whereby their names are disconnected from their numbers – it wouldn’t be too hard to reconnect names with data.
In a spirit of openness, the first 10 people sequenced under the PGP went further than they had to, voluntarily allowing their names and data to be publicly linked. The next 100 volunteers are being recruited now. My parents, husband and I are among them. As a first step, we had to demonstrate our understanding of basic genetics as well as the potential risks of sharing our sequences. If accepted, we too will choose to link our names with our genetic data.
The PGP’s open approach is pragmatic: society has much to gain from unrestricted access to genome sequences, medical histories and phenotypic data. For example, only by knowing how traits, experience and genes interact can we discover how both environmental factors and DNA affect disease. The prospect of such progress was a major factor in my family’s decision to get involved. Whatever our fears about privacy, we have chosen to cast them aside for the greater cause. But no one who chooses to have their DNA tested should expect perfect anonymity – especially since DNA is the ultimate identifier.
Great scientific advances never come without risk, but more often than not hindsight shows us the risks are worth taking. When worrying about the safety of our genetic material, a little humility may be more valuable than musings on costs and benefits or sophisticated safeguards. As my astute father said when our family began sharing our 23andMe results: “I’m not worried. I’m just not that important.”
“Great scientific advances never come without risk, but more often than not the risks are worth taking”
