Sunday, November 30, 2008

Individual privacy rights get another hearing...

Earlier this week, the Arizona Court of Appeals reinstated a lawsuit initiated by the Havasupai Tribe over some blood samples that had been misused by scientific researchers. The samples had been gathered under the guise of diabetes research, but were later used for a variety of other purposes, and used without the permission of the donors or the tribe.

Much of the impetus for the tribe's lawsuit stemmed from the fact that some of the additional research ran counter to the tribe's cultural beliefs, which doesn't generate a lot of sympathy from people who aren't members of the tribe, many of whom may see it as a "backward" tribe standing in the way of scientific progress.

However, everybody should pay attention to this case - it goes straight to medical privacy rights and the right to control what happens when we allow access to our bodies and medical histories.

These researchers specifically told the tribe members that the blood samples in question would be used from only one purpose, even though evidence suggests that the researchers knew all along that the samples were intended for other purposes.

From the AZ Republic's coverage (emphasis mine) -
According to court records, in 1989, tribal leaders asked ASU anthropologist John Martin to initiate a study into the prevalence of diabetes among tribal members. Martin enlisted ASU geneticist Therese Markow.

Markow was interested in schizophrenia and she obtained a grant to study it among the Havasupai, even though, according to court records, Martin told her the tribe would not approve. She pursued the study anyway, courts records show.

Between 1990 and 1992, more than 200 blood samples were drawn. An assistant to Markow actually slept in the Supai medical clinic while gathering the samples. At night, he clandestinely examined the clinic's records, looking for reports of schizophrenia among tribe members, according to court records.

In some instances, there might be an overriding public interest (emergencies, etc.) that allows for medical information gathered for one purpose to be used for another without the explicit permission of the patient(s) involved. However, scientific research is *not* an emergency situation, and the behavior of the researchers in this case (as illustrated above) proves that they lied in order to gain access to private information that they would not otherwise have received permission to access.

I have a lot of respect for scientific research, but am not a fan of the sort of deliberate deception masked as "scientific inquiry" exhibited in this case.

In this case, because of the researchers' obviously planned lies ("deception aforethought"??), the tribe (and through them, all of us) should prevail in the lawsuit.

A loss here would only engender further erosion of individual privacy rights, and that is something that is *not* in the public interest.

Note: basic case information from the lawsuits are available at the links - Coconino County court here; Maricopa County court here.


No comments: