Healthcare News & Insights

Researchers pay settlement for ‘misusing’ donated DNA

A dispute between medical researchers and an Indian tribe that agreed to have members donate DNA for study could have a significant impact on future research and what constitutes informed consent.

The dispute is part culture clash, part confusion over how to balance on the constantly expanding boundaries of medical science.

It all started several years ago, after the Havasupai tribe approached the medical community looking for answers to the tribe’s extremely high rates of diabetes. Researchers from Arizona State University agreed to look into it, thinking they might find a genetic marker that had been identified in another tribe with high rates of diabetes. The Havasupai live in one of the most remote towns in the U.S., at the very bottom of the Grand Canyon.

The diabetes research soon ended in a dead end. But a few years later, other researchers used the frozen DNA samples and new technology to investigate other medical issues.When the tribe found out about the other research (after the fact) they filed a complaint with the university.

Science vs. mythology

The Havasupai had signed a broadly worded consent form to allow the blood samples to be used to study “behavioral/medical disorders.” The original researcher said the wording was deliberately simple to make it easy to understand for the tribe members who are generally poorly educated and speak English as a second language.

The tribe claims members never would’ve given consent to some of the other research uses, especially research that disputes the tribe’s own origin myths — which could conceivably undermine their claims to the land they live on.

Eventually, the University agreed to return the remaining blood samples, pay $700,000 to 41 tribe members who donated blood and provide other assistance, including scholarships and funds for a new health clinic.

Few would argue the scientists involved had malicious intent. But the case highlights a growing cause for concern in the research community.

Most medical practitioners see informed consent as notifying patients against potential physical risks (side effects, delayed treatment, unforeseen injury, etc.). But as science expands and is able to learn more from DNA and other tissues, the emotional stakes for patients get higher — and it’s hard to draft an informed consent clause that covers those risks.

Researchers face other ethical dilemmas when it comes to using older donated tissue: Tests that didn’t exist at the time may not fall under the consent previously given by the patient/donor. And tracking donors down to get additional consent is a time-consuming and largely ineffective task. Scientists say more stringent standards would serve only to halt much new research.

Where should the line be drawn on using donated samples for continuing research? Share your thoughts in the comments.

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