DIY DNA kits thrive in consumer markets but corporate ambitions go beyond 99 dollar deals. Vague results, property rights, and privacy concerns abound.
Lena Orlova // Contributor
Christine Wei // Illustrator
“Science is as corruptible a human activity as any other.”
Michael Crichton (author of Jurassic Park) writes in Next, appropriately setting the stage for the current era of genetic testing.
You open the box. It comes in minimalistic white packaging: a clear biospecimen zip-lock, a capsule, a buffer solution, and at least three sets of identical instructions – with pictures. IKEA for composing your own DNA sample. No doctor consent required – just your kit and a postmark. FedEx express ships the spit capsule to a federally certified lab in sunny California. Companies offering direct-to-consumer DNA testing make a beeline for the democratization of healthcare data; they give the power to the people to access and interpret their own DNA. One of these – 23andMe – made it to Time Magazine’s 2008 list of “50 Genius Companies”.
At-home genetic test kits have been available for more than a decade, attracting more customers every year with no sign of slowing down. “By the start of 2019, more than 26 million consumers had added their DNA to four leading commercial ancestry and health databases,” reported the MIT Technology Review in February.
To understand how it works think back to high school biology. Recall early mornings, blackboards and laminated projector-screen notes. DNA is the blueprint of life. Every organism on Earth has its own. Despite our height, various colours and shapes, human beings share 99.5 percent of the code: which means we only differ from each other by about 0.5 percent.
The laboratories of 23andMe zero-in on that 0.5 percent. Scientists use algorithms that pick out sequences in the code called single nucleotide polymorphisms (SNPs or colloquially referred to as “snips”). Sometimes, these SNPs can determine a person’s visible traits, health predispositions and relatives.
DNA is unique in that it is simultaneously distinctly yours and shared substantially with your blood relatives. It’s at once, perhaps, our most intimate belonging and as easy to leave behind as a lost set of house keys. Although your body belongs to you, you are not its owner.
The ethnic group matches are only as correct as the number of people that take the test, too. The most studied of these groups are European and North American; they buy most DNA kits on the market. Many less developed countries remain grossly underrepresented, warranting improvement of these ancestry services. “I have a lot of doubts… because the results change basically daily. Everytime I log-on, the results change. It’s said that as more people do the test the more accurate it becomes. I’m not sure about that.” reflects China Cheneise Couture about her own ancestry report.
It’s only possible to say that we inherited DNA from somebody else, but not to say where that somebody else lived. We live a history of migrations, colonizations, and other population mixing events. Great-great-great-grandma may be Argentinian, but it doesn’t mean she knew how to dance the tango.
“I was connected with a few other family members who had been lost to adoption,” wrote one woman who took the DNA test offered by Ancestry.com.
“There is no real connection there. My daughter and I were reunited via Facebook and it was a thrill for me to see our DNA connect, too.” she added.
Since 2014 in Canada, 23andMe offers a supplemental health component that screens for disease markers. “While [the test] not a diagnostic test for individuals with a strong family history of disease, it is a powerful and accurate screening tool that allows people to learn about themselves,” writes 23andMe founder Anne Wojcicki for New York Times. For example, if someone were a carrier for gene APOE e4 they are more likely to develop late-onset Alzheimer’s than someone who does not carry the gene. Diseases are complex: they depend on both genetic and environmental factors. Knowing you’re a carrier allows the possibility of making proactive choices that restructure lifestyle, such as adopting a healthy diet and exercise plan.
Self-knowledge is a great benefit but government agencies are slow to jump on the bandwagon. They encourage healthy skepticism before customers decide to hand over their DNA. In France, direct-to-consumer genetic testing kits are illegal as per the country’s bioethic laws. That’s not say France doesn’t use genetic sequencing, the law is more of a means to ensure genetic testing is done in conjunction with a professional genetic counsellor or a licenced doctor.
The Office of the Privacy Commissioner of Canada warns, “when companies are not open or clear about their practices or when individuals do not take the time to review their privacy policies, there is a risk of undergoing a genetic test without knowing or fully understanding what is being agreed to.” Yet 23andMe proudly guarantees that “you decide how your information is stored, used and shared.” Individuals have the right to ask that their data be destroyed. However, up to 80 percent agree to have their data shared for research purposes. This makes it easier for labs to acquire genetic data without laboriously recruiting patients for study. In this way, the consumers facilitate research.
With consent, DNA can be shared with research labs, pharmaceutical companies and other subsidiaries. The genetic material is stripped of name, location and any other markers that could trace it back to the donor. Pharmaceutical companies use this data to discover new drugs, turn a profit. The individual “[acquires] no rights in any research or commercial products that may be developed by [the company] or its collaborating partners.” Bottom line, the donor isn’t compensated for their contribution.
“How did you think 23andMe was going to make money? It wasn’t with $99 spit kits.” wrote Jonathan Gitlin on Twitter. 23andMe board member Patrick Chung shared with FastCompany that from acquiring DNA data from millions, we will have “Google of personalized health care.” Now that’s a lot of power, straight out of an episode of Black Mirror, a far Dystopian future.
23andMe was founded by Anna Wojcicki. Previously to becoming an entrepreneur, she worked on Wall Street as a healthcare investing expert. She was also the wife of Google founder Sergei Brin, making Google one of the company’s initial investors. The biggest shark in the metaphorical tank of information services invests in a genetic testing company. 23andMe’s other investor is GlaxoSmithKline, a multinational pharmaceutical giant with whom Wojcicki reported a partnership. In a polished and positive manner Wojcicki writes on her website that the deal will: “accelerate[the company’s]
ability to make those novel treatments and cures a reality.” In response to the announcement, one customer of 23andMe tweets: “Making money off our genetic data? I just revoked all permissions/consent for my 23andme results. See ya.”
Worldwide genetic databases raise concerns for individual rights. Canada lags in instituting thorough legislation, but recently passed the The Genetic Non-Discrimination Act (GNDA) in 2017. The law bars discrimination based on genetic information in the provision of goods and services.
“Genetic discrimination has become an increasingly contentious topic in Canada,” The Guardian reported. Since 2017, the news outlet adds, “insurance companies will no longer ask individuals applying for life insurance up to $250,000 for genetic testing information,” but, “[these companies] may use genetic testing information for individuals applying for greater amounts.”
Right to privacy doesn’t apply if the company is subpoenaed. While companies like Ancestry.com refrains from “voluntarily [cooperating] with law enforcement.”, that doesn’t stop U.S. citizens from willingly uploading their23andMe DNA results on GEDmatch. This open source, public database allows police access to over 1 million profiles. Such cooperation with law enforcement facilitated the 2018 arrest of California’s Golden State Killer. He is held responsible for dozens of murders, rapes, and burglaries between 1976 and 1986. Later, a canvassing of public opinion showed that the majority of users – upwards 70 percent – supported the disclosure of information to police, when it resulted in catching dangerous criminals.
Michael Begg, an instructor in CapilanoU’s Department of Legal Studies, underlines the murkiness of the matter. The area is new. It’s difficult to find legislation that defines the who, what, and how, of genetic business. This much is clear: a contractual clause may prevail over property or privacy rights, if it’s not prohibited by statute. Theoretically, if a person is fit of mind and has signed a contract where the terms of service are stated unambiguously, they may sign away their rights to DNA.
Ready or not, genetic data continues to amass faster than we, on an individual level, know what to do with it. The race for bigger and better genetic products outpaces legislation protecting customers from invalid contract traps.
The perfectly appealing white box sits on my desk. I stroll through the contract agreement on the 23andMe website. Soon, my DNA sample will be off to their labs.
Crichton’s words remind us that not even science is impermeable to the human desire for novelty. Big data can mean big discoveries and big benefits, it can also mean big business. And who pays for that?