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Scientific Hubris and Informed Consent

If Inside Higher Ed is accurately summarizing the facts, this case seems like it ought to be open-and-shut. In brief, a researcher got informed consent from members of the Havasupai tribe to take blood samples to do research on diabetes among tribe members. Later, some other researchers used that blood to do other research -- research that the Havasupai did not, and likely would not, consent to.

One of the offending researchers is a case study in scientific hubris:

That article stressed the difficulties posed for researchers by the dispute, particularly since the Havasupai have stopped cooperating with most studies, and some other Indian groups have expressed similar reluctance. Markow noted that the research to which the tribe objects could help many of its members. "What concerns me deeply is that the allegations have resulted in a moratorium on biomedical research on the Havasupai reservation, excluding this and other communities from discoveries with the potential to address their health concerns," Markow told Nature.

I'll grant for the sake of argument that Markow's research would have substantial benefits for the tribe -- though I believe that in general, academic researchers have a bad habit of exaggerating the concrete benefits, to the subjects and to the wider society, of their research. But the people you need to convince of that are the Havasupai. And the researcher whose actions led to the moratorium (again, assuming the Inside Higher Ed story is accurate) has no right to complain about its negative effects.

Scientific research is great. I personally would consent to researchers doing whatever scientifically valid research they like with any samples of my blood they happen to have, and if I had my druthers we'd have a comprehensive database of blood samples with a blanket consent license. However, the fact that it would be nice to have such a thing does not relieve researchers of the duty to secure the actual consent of the subjects. This is especially, especially true when the subjects are in a substantially less powerful social position and have a history of being exploited and having their perspective and knowledge treated as invalid by the very scientific establishment that's now proposing to play fast and loose with the consent rules.

What's more, short term paternalistic hubris that forges ahead simply because you can has negative consequences -- for the subjects and for the scientific community -- in the wider view. In the Havasupai case, we get this:

[Havasupai lawyer Robert] Rosette said that the knowledge that their blood was used against their wishes has had a devastating emotional impact on tribe members, who feel that they have been lured into violating their most sacred beliefs by giving up their blood and who also have lost trust in Western medicine. "Now we have people who won’t even see a doctor. We have plaintiffs in this case dying and losing limbs because they are afraid of doctors."

There are interesting parallels here to the issue of local police enforcing immigration law. When police start short-sightedly taking advantage of any opportunity that presents itself to nab someone who's undocumented or otherwise out of status, they end up undermining trust with the whole community (including citizens and people with status), ultimately causing harms to the community (fear, non-compliance with emergency relief, etc.) and undermining the police's larger job of crime prevention (to the detriment of the immigrants' community and the wider society).

Researchers have a duty to gain the trust and consent of both the wider public and the specific research subjects -- especially if the justification for their research is its alleged benefits to those very people. The drive for knowledge does not trump everything else. Even when people ought to consent to research, the researcher has no right to enforce that duty by forging ahead despite a lack of consent.

There are some more complicated issues circling in this area. One that springs to mind is the clash between individual and collective consent. The current paradigm of informed consent assumes that the harms from participating in the research accrue to the research subject, and thus can be accepted or avoided on an individual basis. But that is not always the case. For example, one of the harms that leads the Havasupai to not consent to the new research is that the results support the theory that Native Americans migrated from Asia, disproving the tribe's traditional religion (causing emotional distress and undermining their way of life which was premised in part on that origin story). Let's say a researcher followed proper informed consent protocols and found a significant number of Havasupai who would in fact consent to having blood samples taken for the out-of-Asia research. When the research results come out, it's not only the actual blood donors whose traditional religion is challenged -- it's all Havasupai (and indeed, there would likely be collateral impacts on all other Native American tribes). So do the non-consenters just have to suck it up and deal? Or do they get a veto -- and if so, how many noes are needed to cancel the research? What person or institution has the authority to speak for the tribe? And how can non-tribe-member researchers sort through the issues when tribal members dispute the answers to these questions with each other?

Another issue is where the boundaries of consent lie. Imagine that the out-of-Asia paper didn't require re-analysis of the actual blood samples -- instead, the author could support her point simply by citing the published results of the consented-to diabetes study. In one sense, such a paper seems to have potentially the same effects as the real direct-blood-analysis-based paper, albeit without the additional sense of invasion created by the direct work with Havasupai body parts. But to stop published research from being cited in support of projects the original subjects wouldn't consent to would be a serious change in the norms of scientific discourse.


Blogger Laurel said...

This is a great essay. Very interesting. I wasn't aware of the case of the Havasupai. If there isn't already a precedent of biological property rights, there most likely will be soon.

8:02 PM  
Blogger Alon Levy said...

You're opening a very ominous can of worms when you say that having one's ideas proven wrong is a harm scientists should take into account. That would've implied that maybe Galileo shouldn't have said the Earth orbits the Sun, Kepler should have remained silent about the fact that planetary orbits are elliptical rather than circular, and Darwin should never have published his results on evolution. All of these, after all, destroyed some of Christendom's most cherished beliefs.

10:00 PM  
Blogger Stentor said...

Alon: I find those implications rather ominous as well, and the Galileo example came to mind as I was writing. I think a key point, though, is that while withholding informed consent is based on concern over some harm, it's not the researcher's place to second-guess whether the consent-withholder withheld the consent for legitimate reasons or not.

11:54 PM  
Anonymous G.E. Wilker said...

Can informed consent ever reasonably be said to apply to people who are not affected directly by the study, but only by its results? You bring up the idea of collective consent, because the results of the study challege the religion of the entire tribe. However, in a sense anyone on Earth who reads a study is affected by it. Less rhetorically, anyone whose government changes their policy based on the results of a study is affected by it. Do they all need to consent? While collective consent might apply to, for example, an archaeological dig conducted on tribal land, I can't see how it applies to research done with individual blood samples without challenging personal autonomy.

While it's not a researcher's place to second-guess why someone would not consent to research of which they would be a subject, it's not anyone's place to stand in the way of research because they are upset by its conclusions. You raise the idea of a paper that simply cited the results of the diabetes study to support an out-of-Asia conclusion, saying it would have similar practical effect as a new study with the samples, absent the "additional sense of invasion created by the direct work with Havasupai body parts". I would say that the sense of invasion is the only legitmate basis of objection; once research is part of the scientific literature, it belongs to no-one.

To drag out a tortured analogy, suppose I own a piece of land with a lake in it, and researchers ask my consent to do a study on fish populations in the lake. I have no objection. However, the county government protests, saying that the research will probably lead the state government to restrict fishing, reducing the income of many local residents. Would you say the county's non-consent based on the economic welfare of its residents should override my personal consent to the use of my land? The study's results might have negative economic effects, but the study in itself affects nobody else, since the lake is on private property.

9:57 AM  

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