As genetic testing and sequencing becomes more routinely used in different aspects of medical care, from pediatrics to gerontology, we’ll have more information at our disposal to be able to link distinct health risks with our unique genetic inheritance. Obamacare is set to give many Americans better access to health care, but it might also inadvertently set them up for genetic discrimination. Thanks to a glaring loophole intentionally crafted into GINA, insurance companies have free reign to use that genetic information against us when they determine the premiums they will charge us for disability and life insurance. Here’s where things get even more frightening. These days, a potential insurance provider, or anyone else for that matter, doesn’t have to touch a single one of your cells to get a lot of information about your genetic inheritance. Among scientists like myself, it’s common practice to share genetic and sequencing data with other researchers while removing identifying information such as names and social security numbers. But what most of us have always seen as a relatively solid privacy protocol, an astute team of biomedical experts, ethicists, and computer scientists from Harvard, MIT, Baylor, and Tel Aviv University saw as a potential target to be hacked. Plugging short segments of seemingly anonymous information into recreational genealogy websites (the users of which are increasingly including genetic information as a way to track down long-lost family members), the researchers were able to easily identify the anonymous patients’ family groups. And with just a little additional data that’s commonly included in shared samples—age and state of residence, for instance—they were able to triangulate the precise identity of many individuals. This can also work the other way around. Do you have a family member who has survived cancer? Did they keep a blog? Facebook it? Tweet about it? Social media’s not just a great way to keep in touch with our loved ones—it’s also a potentially very deep and rich source of information for genetic cyber sleuths. Already, more than a third of employers say they’ve used information found on social media sites such as Facebook to eliminate job seekers from the applicant pool. With employer-based health-care costs in the United States rising ever skyward, companies might feel justified in making a social media health status sweep a regular, if secretive, part of their hiring practices. Using just your name and the millions of genealogy records publicly available on the Web, an inquisitive and resourceful person—someone considering hiring, dating, or marrying you, perhaps—could come to know more about you than you might even know about yourself. And if you just happen to be that resourceful and inquisitive person and there was a much easier way for you to access someone’s genetic information without them ever knowing, how far would you go? What I’m asking you is this: Would you be willing to hack someone’s genome?
We all might have different reactions to different types of medical care based on our genes. The dangerous thing is, that our genes, something we have no control over, can be used to discriminate and prevent us from getting health insurance as such information can be more easily deduced from our digital footprint. This is the danger of having more information digitised and shared.
