By Alex Ellerstein
In the advent of an era of relatively quick and cheap DNA sequencing technologies, it’s hard to avoid hearing about direct-to-consumer DNA testing kits. There are ads on TV for genetic testing where people give testimonials of how glad they are to know their lineage, and how amazed they are that it only cost $99.00. Many who take these tests want to know more about a family history they hadn’t been taught. The heights science has reached to allow this once unheard of procedure to become an easy reality is incredible. However, there is actually a huge and often underplayed risk associated with taking them, and it involves healthcare coverage on the part of private insurance companies.
These kits often have a subset specific to health determination, titled something like “Genetic Health Report,” which advertise the ability to find health risks one may face without the need to consult a genetic counselor. In doing this, people are urged to consent to participate in “informed consent research,” or is what presented to be the use of their de-identified data for clinical studies and pharmaceutical development. This information, however, often ends up in the hands of insurance companies, fully identified, usually through vague clauses in the agreements of the companies. Tiller of Monash University indicates that this facet of direct-to-consumer genetic testing products is going so far as to interfere with medical institutions set up for genetic counseling purposes.
Moreso, even beyond caveats in the official policies of the genetic testing companies, information is often leaked through more direct violations of privacy agreements. Instigated by various instances of law enforcement officials contacting companies to disclose genetic information for forensic purposes, the FTC is beginning new investigations into the privacy regulations imposed by companies like 23&Me. As it turns out, security of such information is shockingly inadequate, with a reported 92 million “MyHeritage” customers having their results leaked. The aims of the FTC investigation, beyond identifying and exposing specific companies at fault, are to incentivize better accountability in a previously unchecked areas. With the looming threat of being put out of business from loss of customer trust, companies will hopefully adopt more responsible practices.
But even with amped up security in genomic databases, there are still ways in which knowing your genome could affect your healthcare. Insurers will often ask while working out policies if individuals have received any sort of genetic testing, and disclosure tends to be mandatory. In withholding such information, the individual risks voiding their policies. Should one's results reveal any sort of familial pattern or linkage to certain conditions, coverage on the part of the company could be substantially reduced. As of now, only 17 out of 50 states legally require that insurance carriers exclude results of genetic testing in writing policies. For the rest, the loss of coverage is a very real and dire risk associated with participating in such testing, and one that is widely unknown.
The impact is much more extreme than most believe it to be, with people entirely losing coverage for important and expensive treatments. Even results to indicate predisposition of a close relative like a parent (without consent of the individual) could be enough to impact policy writings. This is particularly problematic, as Scott Roberts of the University of Michigan concludes that a substantial portion of individuals who engage in such testing see little to no associated risk.
Learning heritage through quicker and cheaper genetic technologies is an exciting new frontier of science, but it is not one without risk. In a country where high out-of-pocket costs are a norm and life insurance companies can be a critical subsidy, it should be a priority of lawmakers to enact policies in the remaining 33 states to better protect the consumer from having their genetic data become public information.
Furthermore, awareness of the security risks associated with genetic testing companies should be heightened so that consumers can make an educated choice about whether or not to participate in testing. It’s amazing that genomics -a branch of science that didn’t even exist a couple decades ago- has come far enough to be this prevalent in day-to-day life. However, it should be harnessed in as safe and responsible manner possible, a path that will hopefully be enforced by continued investigations.