Decrypting the secrets of human existence promises better health, lower costs, and safer environments, and new technologies delivering that promise have quickly gained popularity. At-home DNA tests offer insight about hidden health risks, and the potential for improved outcomes through lifestyle changes and personalized improvement programs.
DNA test results can also be used — by employers, benefits providers, physicians, and patients — in ways that consumers and lawmakers are just starting to appreciate, and that can have multi-generational impacts — both positive and negative.
Senator James Cowan introduced Bill S-201 to provide a mechanism that would protect Canadians from genetic discrimination. Click here to read his comments about the issues and the legislation that he presented at the second National Privacy & Data Governance Congress.
Since that Bill became law, we continue to see slick marketing for direct-to-consumer DNA testing services that prey on our curiosity. To learn our ethnicity. To discover long lost relatives. Or simply to know more about ourselves.
The implication is that whatever we know about our own background isn’t enough. Or valid. Or, worse yet, that having a sense of our own family and medical history is somehow an insult to those who don’t.
The guilt-inducing message implies that knowledge, passed down through generations of a family, is simply not enough or reliable; and that it’s important to spit into a vial and pay for the privilege of a corporation telling you what you already know.
What they are less likely to tell you is that Canada’s privacy laws and anti-genetic discrimination law offer no protection when the DTC test results are in the hands of companies outside of Canada. It’s also unlikely that consumers will be reminded that DTC genetic test results are increasingly being shared with police in an unregulated law enforcement free-for-all that disregards consumers’ privacy concerns.
Nor do the testing companies emphasize that results from a single provider can vary. Or that repeated testing to confirm results or overcome doubts can lead to conflicting results that can inspire unnecessary medical intervention for non-existent problems.
But the potential for dubious results pales against the moral suasion of being invited to contribute toward medical advancements for the public good. Who wouldn’t want to be part of a discovery that could save a life or benefit public health systems?
Consumers are invited to “play an important role in creating the next generation of medicines” by allowing their genetic test results to be used for research. More than 80 percent of 23andMe’s customers can feel good that they have agreed to participate in medical research that could lead to innovative discoveries.
That good feeling is all the compensation they will likely receive, though, from the pharmaceutical companies that are developing new drugs based on the genetic information that millions of consumers have paid to have analyzed.
The feeling might also be different for 23andMe customers who do not consent to their information being shared for research purposes — when they realize that their “Genetic Information and Self-Reported Information may still be used” by the company and shared with its third party service providers.
The good feeling might also wane when consumers realize that the drugs developed courtesy of donated genetic testing results will provide pharmaceutical makers with new revenue streams, but at no cost savings to consumers or the public purse.
And it is a sure bet that consumers will feel less secure about their choice if — or, more likely, when — the companies holding the secrets to their existence exercise the power to control individual lives, or when any database containing the details of their unique genetic make-up is breached. No investigation, financial penalty, or after-the-fact legislation will be able to compensate consumers for the moral turpitude of that eventuality, no matter how strenuously companies insist that they take privacy seriously.