So let’s say, hypothetically, that your lab receives blood samples from a group of individuals to study genetic links with diabetes. However, these samples would also provide important insights into other diseases. But the researchers did not get consent from the blood samples donors for the extra research. For researchers at Arizona State University (ASU) and the University of Arizona (U of A), this was not a hypothetical situation.
They collected 400 blood samples from the Havasupai Tribe around 1990 to understand if there was any connection between genes and diabetes, at the tribe’s request. This particular tribe is from an isolated area of the Grand Canyon, with a restricted gene pool contributing to genetic diseases. This Native American tribe has a high-incidence with diabetes. The researchers did investigate this problem with diabetes, but they also wrote a grant proposal for researching schizophrenia in the Havasupai Tribe, which the tribe was not aware of nor gave consent for.
The main issues raised in this case are:
- What is informed consent? In this case, the consent form stated that the samples were to be used for studies on behavioral and medical diseases. But, meetings between the researchers and tribe members indicated that only diabetes was to be studied. Using broad or vague language in consent forms can lead to miscommunication between scientists and subjects.
- What information in the medical records can be accessed and by who? Some researchers gained access to medical records without permission. Files should be kept in a secured place where only the authorized users have access.
- Who has control of the samples? This is a question that needs to be discussed with the subjects before samples are collected. Researchers might want to contact their university’s research center for more information on sample ownership.
As scientists, we have a set of standards, or ethics, that help members coordinate their actions and establish trust with the public. Below are four ethical norms (or goals) that affect graduate students:
- Promote the goals of scientific discovery, such as furthering knowledge and truth.
- Advocate collaboration between scientists; diversity and collaboration create new and novel discoveries that we can all benefit from.
- Promote accountability to the Public; it’s essential that the Public can trust the scientists to do their best work and avoid misconduct, conflicts of interest, and ensure that human/animal subjects are properly handled.
- Build Public support, without federal funding many of us graduate students would not be able to do our research.
For the misuse of their DNA samples, the Havasupai Tribe filed a lawsuit against Arizona Board of Regents and ASU researchers in 2004, which eventually led to a settlement in 2010. The tribe received $700,000 and their blood samples were returned. The situation with ASU and U of A researchers has left an air of mistrust in Native American communities. As scientists, it’s our responsibility to build trust with the public and maintain open and honest communication.
Peer Edited by Bailey DeBarmore
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