Undark published an article on September 30, 2019, about the “thorny ethics” of collecting genetic data from the world’s indigenous populations. This is an important issue because genomic databases consist overwhelmingly of people of European ancestry. Results from these databases will not generalize well to non-European populations. In fact, the more distantly related a group is from Europeans, the less likely the results from genomic studies on European will apply. As a result, the health benefits of this research will disproportionately benefit Europeans and their descendents, unless the databases are more diverse than they currently are (Martin et al., 2019).
The solution seems simple: collect data from more racial and ethnic groups and ensure that these demographics of these databases are representative of the world population.
But, of course it is not that simple. Beyond the expense and difficulties of collecting DNA from all over the world and the regular ethical issues that apply to DNA collection, the author of the article says that there are special ethical issues that arise when collecting genetic data from indigenous peoples. But close scrutiny of these claims shows that these ethical issues are not “thorny” at all.
The overarching claim is simple: “Collecting the data could exploit the very people the programs intend to help.” But how collecting a saliva sample is exploitative is never clear. One geneticist (Krystal Tsosie of Vanderbilt University) expresses concern that biomarkers could be monetized, but that hardly qualifies as being exploitative. What is lost when someone collects data from an indigenous person? A little bit of saliva. That doesn’t seem like a great loss. (Heck, I leave more DNA each day in my toilet.)
The fact that a biotech company could make money on DNA information doesn’t mean that a donor has lost anything. It is not a zero-sum game. The person who was the source of the DNA was not profiting off of their genetic information, and they are not worse off than they would be before donating their DNA.
Of course, there’s the obligatory reference to the Tuskegee Syphilis Study. But denying medical care to sick people for decades and collecting saliva swabs from people are not comparable. Anyone who sees these as being interchangeable is not being intellectually honest.
A more legitimate comparison in the article is the use of Native Americans’ DNA for research purposes they had not consented about. But–at least in the United States–this issue was settled long ago in a 1990 California Supreme Court case (Moore v. Regents of the University of California) stating that patients do not own their biological samples after they are taken and cannot control how they are used. If you do not want your DNA being used for purposes you don’t agree with, don’t give a sample. While the case is not binding on the entire country, it seems to represent the prevailing legal opinion about control of medical samples.
Is Informed Consent Enough?
A bedrock principle of modern research ethics is informed consent. With some extremely narrow exceptions, people cannot be the subjects of medical or social science research without their permission. The Undark article, though, raises the possibility that informed consent may not suffice for individuals form indigenous cultures. These people may instead need “collective consent.”
Everyone agrees that there are times when it is necessary to get consent from a person other than the research participant. This occurs when a person is conducting research on what are called vulnerable populations: children, people with intellectual disabilities and other forms of diminished capacity (e.g., dementia), people who are institutionalized in prisons and other facilities that they cannot freely leave, and individuals who cannot consent (e.g., a person in a coma).
The Undark article author suggests that indigenous peoples may need “collective consent,” in addition to individual consent to give genetic samples. The article dwells mostly on the difficulties of defining “collective consent” and how to determine whether a particular decision makers has the authority over others in the group to make this decision.
The article misses the point. Saying that indigenous people need collective consent is saying that they belong in the same class of individuals who cannot give meaningful informed consent. This infantilizes indigenous people and implies that they cannot make their own decisions. Instead, they need a benevolent watchdog making decisions in their best interest? Children need that level of protection; indigenous adults are not children.
This does not mean that Western researchers can swoop in and collect DNA samples after getting an informed consent document signed. Researchers still have the responsibility to ensure that the participant understands the research, its risk, and its rewards fully. Customs and religious beliefs about the body and physical contact should still be respected. And if someone insists that they need to consult another person (e.g., a spouse, a clan or village leader, an elderly family member), then such natural collective consent procedures should be allowed to unfold, independently of outsider interference.
It’s Not Just One Person
The best argument in the article against using individual informed consent as a groundwork for DNA collection is from Tsosie, who stated that, “One’s genome is not their own specifically; one’s genome is informed by their recent ancestry, their family structures, and their more distant ancestry.”
She is right that a person’s DNA never gives information solely about themself. It always reveals information about relatives–the closer the relative, the more information it provides.
But that ship has already sailed. Genomic data is already being used to capture criminals when their distant relatives uploaded their own genome to a public website. The most notorious example is the Golden State Killer, who was identified through a genome uploaded to a public web site by a third cousin. Unidentified murder victims are being given their names back using the same technology. After these precedents, there is no going back.
It’s logically inconsistent to say that using freely obtained DNA samples to learn about a person’s relatives is OK when police are trying to solve a crime–but not acceptable when scientists want to learn about someone’s medical risks or population history. Actually, law enforcement’s use of relatives’ DNA to solve crimes is more ethically problematic than scientists’ use of DNA to identify medical risks and understand a group’s evolutionary history. Law enforcement’s use of this information may cause someone to lose their freedom. That’s not true when scientists use DNA data.
Where’s the Harm?
In the entire article, there is one glaring gap: no one who opposes collecting DNA from indigenous populations has shown that any harm actually occurred when someone’s DNA was used in a genomic study. No one has been killed, injured, or cast out from their group. Thousands of DNA samples have been collected from all over the world. If individual informed consent procedures are so inadequate and dangerous, surely it would be easy to point to someone who experienced grave harm from participating. Yet, no one has ever shown that this occurred.
Real harm outweighs hypothetical harm. Vague notions of possible future harm should receive little consideration. There is real harm, though, in forbidding this research or creating roadblocks. The science is advancing, and indigenous peoples who are not represented in these genomic databases will never be able to reap the benefits of new knowledge about mental and physical health that this research will bring. When these treatments are delayed or less effective for them, then there is real harm.
Power and Obstructing Science
All these arguments about collective consent, a desire to control how one’s DNA is used, and fears about exploitation have one thing in common: they’re just an excuse to block scientific progress. The reality is that these people want to be self-appointed gatekeepers who have power to make decisions on behalf of others in order to decide what scientific questions can and cannot be addressed. Whether it is the San Council in South Africa or a tribal government in the United States, these people want power.
There is no reason to believe that they speak for all members of an indigenous group. (Indeed, in the Undark article, some San people did not want an advocacy group representing them.) And there is no evidence that consulting these groups and obtaining collective consent will lead to better science.
If knowledge about individual peoples and their health is to advance, then they need to be represented in DNA databases. Culturally sensitive informed consent procedures ensure that this occurs ethically. Adding additional hurdles and constraints will provide no benefits to indigenous people and may actively cause harm.
Martin, A. R., Kanai, M., Kamatani, Y., Okada, Y., Neale, B. M., & Daly, M. J. (2019). Clinical use of current polygenic risk scores may exacerbate health disparities. Nature Genetics, 51, 584-591. doi:10.1038/s41588-019-0379-x