Do not give your genetic material to them
Last week, DNA testing company 23AndMe announced that it sold the rights to a drug it developed using its database of customers’ DNA to the Spanish pharmaceutical company Almirall. 23AndMe has sold over 10 million of its DNA testing kits to consumers looking to learn more about their ancestry and health predispositions. Customers submit a sample of their DNA, which the company tests to provide the information. The revelation of the drug development has raised anew concerns about the ethics of the business model of ancestry DNA testing companies. How many of the people who agreed to have their DNA profiles put in these companies’ databases understand how that information may be used? The terms and conditions and related agreements for these websites are so convoluted that they turn around lawyers, who wrestle with those issues for a living.
The sale of DNA testing kits was never intended to be the long-term profit driver for 23AndMe, AncestryDNA (the two largest ancestry websites) and similar enterprises. The DNA samples gathered are being collected to construct databases. The databases and the information that can be gleaned from them are what’s valuable. When people provide biological samples that will be used in private medical research, they are usually paid. Perhaps not much, but they are compensated. The reverse happened with 23AndMe’s drug development. The subjects paid the company to take their samples, and the company turned a profit on the transactions. In return, the subjects received information that isn’t reliable. Those ancestry tests can’t tell people what they want to know. Writing for Scientific American, geneticist, Adam Rutherford says (emphasis added):
When it comes to ancestry, DNA is very good at determining close family relations such as siblings or parents, and dozens of stories are emerging that reunite or identify lost close family members (or indeed criminals). For deeper family roots, these tests do not really tell you where your ancestors came from. They say where DNA like yours can be found on Earth today. By inference, we are to assume that significant proportions of our deep family came from those places. But to say that you are 20 percent Irish, 4 percent Native American or 12 percent Scandinavian is fun, trivial and has very little scientific meaning. We all have thousands of ancestors, and our family trees become matted webs as we go back in time, which means that before long, our ancestors become everyone’s ancestors. Humankind is fascinatingly closely related, and DNA will tell you little about your culture, history and identity.
Direct to consumer DNA testing companies also provide screening for health predispositions. Rutherford discussed shortcomings on this front too. One analysis found a 40 per cent false positive rate for direct to consumer disease variant tests. One company failed to identify a sample of DNA as belonging to a dog not a human.
So, to review: customers paid for ancestry information that’s useless, health information that may have a staggeringly high error rate, and the companies received the treasure trove of their DNA, which they are using to enrich themselves. If anyone whose DNA was used in one of the pharmaceutical studies needs the drugs developed, they’ll be price-gouged on the back end along with everyone else after having been hoodwinked on the front. A huge heist is happening.
23AndMe’s terms of service tells its customers: “You specifically understand that you will not receive compensation for any research or commercial products that include or result from your genetic information or self-reported information.” Is this fair, particularly when you consider that the information the customers paid for isn’t reliable? Of additional concern, the “x% geographical region” formulation these companies use to provide “ancestry” information is reminiscent of lazy race science that undergirds eugenicist beliefs and policies. These profiles are very likely going to be used to discriminate against people who are too much of the wrong thing. The health information, including the false positives, creates additional risks for discrimination.
The legacy of chattel slavery in the Americas and Caribbean created a Black population that is cut off from its ancestral roots. Some of the descendants of enslaved Africans have turned to DNA ancestry websites for answers, answers that have been misrepresented to them. Now their genetic material is being used in medical research — a discipline that has a long history of exploiting and abusing this population. James Marion Sims, who is often called the father of American gynecology and invented the speculum, experimented on enslaved Black women without using anesthesia. Some of the enslaved women were operated on over 30 times. The infamous Tuskegee Study of Untreated Syphilis in the Negro Male conducted in secret by the U.S. Public Health Service also leaps to mind. The word “untreated” in the title of the study exposes the cruelty. The curable disease was allowed to progress without intervention and without informing the men being studied they were infected. The subjects were told they were receiving benefits they didn’t, such as treatment for rheumatism and bad stomachs.
Most relevant for the development of these DNA databases is the case of Henrietta Lacks and her immortal cells. In 1951, while undergoing treatment for cervical cancer at Johns Hopkins, without informing Lacks or obtaining her consent, her surgeon took a sample of her tumor and gave it to a research team. Lacks died soon after, but her cells were a boon to medical science. The cells double around every 20 hours, can grow indefinitely (most cell lines peter out), and can be frozen for decades. The robustness of what became known as the HeLa cell line make them incredibly valuable for medical research. The cells played a vital role in the development of the polio vaccine and have been essential in a wide variety of studies — particularly cancer research, where the effects of toxins, radiation, viruses, etc. on cancer cells can be conducted without human experimentation. In a strange twist, the “factory” for growing and shipping HeLa cells was run by Black scientists and technicians at Tuskegee University at the same time the syphilis experiment was being conducted. HeLa cells have been used to develop several drugs, and variations of the cell line can sell for upwards of $10,000.
The fear that Black communities will be particularly ill-used by these DNA testing companies isn’t being pulled out of thin air — there is a long, fraught history to consider. These concerns go beyond medical racism. Sites like 23AndMe and AncestryDNA have a feature that allows users to make their DNA profiles public so other users can search for familial matches. Users have the option to build out family trees, which can also be made public. Law enforcement agencies are using this information to gather evidence.
Between 1974 and 1986, there was a series of 50 rapes and 12 murders in ten California counties. The crimes were attributed to one perpetrator, who became known as the Golden State Killer or the East Area Rapist and the Original Night Stalker (EARONS). The dormant case was cleared after investigators submitted DNA from evidence gathered from a 1978 EARONS crime scene to sites like 23AndMe and AncestryDNA hoping to find a match in the publicly available DNA profiles. They got a hit on a “distant relative” from GEDMatch — an open-source genealogy site that allows users to submit their DNA and search for familial matches for free. Investigators combed the family tree connected to the profile looking for potential suspects and it led them to a 72-year-old man named Joseph James Alexander, who was a police officer in the area during the time span of the rapes and murders. Alexander was placed under surveillance, and the officers retrieved samples of his discarded DNA, which were found to match the sample from the 1978 crime scene. Alexander was arrested and charged.
Genealogical websites with public DNA profiles have been used to solve other high-profile cold cases and perhaps are being used in investigations that aren’t making the news. This practice raises a slew of issues. Whenever someone sends a DNA sample to companies like 23AndMe, AncestryDNA, and GEDMatch, they are also sharing information about relatives they may not even know, who may not want information about them in those databases. Also, any digital dragnet may capture a large number of people who share the same DNA markers. If a person is identified as a potential suspect, like Alexander in the EARONS case, they will likely be placed under surveillance and watched until they spit out a piece of gum or discard a disposable coffee cup so investigators can extract DNA from the saliva. Even if they are cleared, their name and a sample of their DNA are now on file with a law enforcement agency. How long will the DNA sample be kept? Will it ever be destroyed? How long will any DNA profiles generated from the sample be stored electronically? The increased likelihood of contact with the police is something certain communities have very good reasons to want to avoid. In the event that one of these familial DNA searches turns up a pool of suspects whose communities are disproportionately targeted and harmed by police, will they be confronted and harassed instead of surveilled? Is having to consider these possibilities something anyone using these ancestry websites signed up for?
After learning that GEDMatch had been used to clear the EARONS case, the company released a statement saying, in part, “If you are concerned about non-geneatological uses of your DNA, you should not upload your DNA to the database and/or you should remove DNA that has already been uploaded.” This is advice everyone should heed. Removing your DNA from the databases of profit-driven companies like 23AndMe and AncestryDNA isn’t a readily available option, but anyone whose DNA profile is public should revisit that decision. Functionally, these ancestry DNA testing websites are the feds. I don’t think it’s wise to give your genetic material to them, particularly if you are a member of a marginalized community that is subject to discrimination, especially in health care or from law enforcement.
All Rights Reserved for Kitanya Harrison