How to Think about Genetic Privacy
Everyone values privacy. But we also know that in order to get good advice from friends and family about our career or about our romantic relationships we need to share personal information. And in order to improve our health, we often share information with doctors and dieticians. But when it comes to genetic information, it's not so clear. When should we share it? What are the risks worth worrying about when other people have access to it?
Genomics can reveal our ancestry, predict disease risks, and will eventually indicate a good deal of our general cognitive ability. As the accuracy and speed of genetic testing increases, and the power of genomics to predict complex traits comes to fruition, we will be able to understand ourselves better, but we’ll also develop more concerns about who can access, use, and control this data.
So how should we think about genetic privacy? Most people don’t want their genetic data released to the public for the same reason they don’t want their bank details to get out: they don’t want employers, romantic partners, or government agents to use their information to exploit them. When the seller of a car knows more than the buyer, the buyer worries that the car might be a lemon. Someone whose car is in better than average condition will reveal as much information as possible. But someone whose car was poorly maintained or badly built will tend to conceal the car’s condition. Something similar might happen if people know they have exceptionally good or bad health, especially when their health is affected by their genetic endowment.
If we have an elevated risk of a disease and our genetic information is available for all to see, a health insurance company might want to raise its prices or deny us benefits. Some economists would say this is an efficient outcome – insurance companies should charge healthier people less than unhealthy people, even if their condition is out of their control, since they are cheaper to cover. But many people have objections to allowing insurance companies to access information about us without our consent so that they can raise our premiums or deny us coverage. On this view, the point of rules prohibiting insurance companies from knowing much about our genetics is to keep the market for insurance “fair” (in the sense of benefiting vulnerable patients most) but inefficient.
But there are other cases in which people don’t seem to mind much if their genetic information is shared.
Plenty of people already allow their genetic data to be accessed by databases that use it to increase the accuracy of ancestry testing, or help authorities solve murders by allowing them to narrow down the case to someone within a particular family or ethnic group.
Millions of people have agreed to share their genetic data with companies like 23andMe or Ancestry.com in exchange for increasingly accurate results. These results benefit the users by telling them where they came from, and which genetically-influenced diseases they make be at risk of developing. In fact, this information is impossible to predict for individuals unless we have a large pool of people who are willing to allow companies to compare their genome with enough other people to see which variants predispose us toward developing specific diseases like Alzheimer’s.
Some people have authorized the use of their genetic data to help companies solve crimes. Companies like DNAsolves.com can create a database that allows them to classify people into genetic clusters like families, ethnicities, and other populations that can be used to narrow down the suspect of a crime or figure out the identity of an unidentified victim of a crime or accident. According to one survey, about half of Americans are willing to share their genetic data with law enforcement if it helps solves crimes.
Dating and marriage is another arena in which people might either embrace sharing their genetic data, or resist it. One of the hallmarks of meeting someone new is that we have asymmetric information: each of us knows more about ourselves than other people do. Sometimes we want to keep it that way – if we have credit card debt or psychological trauma that might turn someone off. In other cases, we want to advertise traits that we’re proud of. People brag about the schools they’ve attended, what kind of car they drive, or whether they’ve traveled to exotic places. More subtly, they may try to show off their intelligence or artistic abilities or openness to experience.
Genetics can reveal at least some of the variants that influence these traits. Intelligence and self-control, which can help predict health and income, for example, are highly heritable. To the extent that people are attracted to the manifestations of these traits, knowing something about our genetics might give them reasons to seek out or avoid certain people. While judging someone by their genetic potential may seem creepy, presumably some people would want this kind of information to filter out people in the dating market with whom they are likely to be incompatible.
Finding a mate or a job or avoiding price discrimination in the insurance market are only the tip of the iceberg when it comes to why we may want to hide or advertise our genetic data.
So, what should we care about when it comes to privacy? Since we value different kinds of privacy, it’s worth distinguishing at least two common concerns. One concern over privacy is about protecting our anonymity: those of us who want to contribute our genetic data to understand our ancestry or help solve crimes don’t want our genetic data publicly attached to our name, even if it is accessible to scientists who use it to solve crimes or build better ancestry maps. This may require new genetic privacy laws, or at least the enforcement of contracts that prohibit companies from sharing our genetic data without our consent.
Another concern over privacy is about shielding prospective employers or companies or romantic partners from having specific kinds of genetic data – information that they might use to lower our wages, raise the prices we pay for insurance, or ghost us before we go on a date and have a chance to prove ourselves. Plenty of people will have reasons to make certain aspects of their genetic data public, while others will want to make some of their data known to employers but not romantic partners, or vice versa. A 2008 law covering genetic privacy called GINA prohibits employers from using genetic data to discriminate against their employees. But this may go too far. After all, some people have good reasons to advertise their genetic potential to the world, especially if they’re winners in the genetic lottery.
More than anything else, it is crucial that we enshrine informed consent into laws protecting genetic privacy. Since people differ not only in their genetic potential, but also in their desire for anonymity, blanket prohibitions are misguided. Instead, we should honor the diversity of attitudes people have about which aspects of their genetic information they’d like to reveal, and which aspects they’d like to conceal.
Furthermore, it's important that private companies acknowledge the privilege and responsibility of being caretakers of the genetic information entrusted to us – as we do at Traitwell. Protecting that data in the electronic sense is certainly important but it's not enough – we must also take care that it's used ethically.