Fri May 18, 2012
Audry Bernal
Broken Promises
By Audry Bernal and Stephanie M Fullerton, Arizona – October 2010
Center for Genomics and Healthcare Equality, University of Washington, Seattle, WA
In April, the Arizona Board of Regents settled a lawsuit with the Havasupai Indian tribe of the Grand Canyon, acknowledging a 20 year chapter of profound misunderstanding and community betrayal related to a research project conducted with tribe members’ DNA. While the tribe has formally ended their dispute with Arizona State University (ASU), both the research world and the Native community are still reeling from the resulting loss of trust. Moreover, the trial and tribulations in this case offer important implications for anyone contemplating involvement in genetic research.
What happened? The research in question began with good intentions. An anthropologist and long time friend of the Havasupai nation asked Teri Markow, at the time a fellow faculty member at ASU, to help investigate the causes of diabetes, an important health concern to the tribe. Markow, a rising star in the world of genetics research, collected 400 blood samples from tribal members, under a verbal understanding that those samples would be used to investigate diabetes. However little, if any, diabetes-related research was done.
Instead Markow used the samples to investigate schizophrenia and inbreeding, and shared the samples with other researchers who used them to investigate the genetic history of the tribe. These other research uses were regarded by Markow as legally appropriate because tribal members had signed a broadly worded consent form describing research uses that might include “behavioral/medical disorders.”
However, the other research uses had not been discussed with the Havasupai Tribal Council. In fact, it was not until a tribal member accidentally discovered the use of the samples for migration studies that the tribe became aware of the other ways in which their samples had been used.
The tribe was deeply upset and took ASU and the Arizona Board of Regents to court, eventually settling for $700,000 and a range of other benefits, including telemedicine services for tribal citizens and scholarships for attendance at Arizona universities.1
This case is just one of a set of recent examples of research participants (and others who have contributed samples for health-related reasons) finding out that their data were being used in ways that they were unaware of, and for which they had not given explicit permission.2-4 In each case, “business as usual” approaches to informed consent and data sharing, based in federal research policy which permits open-ended consent and broad distribution of anonymized genetic and health data, have resulted in a deep disconnect between participants’ interests and researcher practices.
This disconnect is most apparent, and troubling when it involves a sovereign nation such as the Havasupai. As most tribes will tell you, the Havasupai especially trust, respect, and reciprocity are crucial to any partnership or collaboration –research included. When someone is asked to sign onto a research study, they are, in effect, being asked to trust that the researcher will do what they say they will do.
As disturbing as this unethical incident is, the fact that similar disconnects outside of tribal country are occurring suggests that the problem runs far deeper. The consent form is the legally binding codification of a research agreement. However, an overly broad consent form, or an agreement that is not fully transparent with respect to research intentions, can profoundly undermine trust and jeopardize the pursuit of research.
For tribes like the Havasupai, it will take a long time to re-build trust in the academic research community. For the rest of us, it is our responsibility to look closely at the consent forms we sign, or ask others to sign, and ask whether and how the “legalese” may be getting in the way of researchers serving as trustworthy stewards of participants’ data. Until we do so, we risk more community betrayal and disenchantment with the research process.
Cited References
1. Harmon, A. Indian tribe wins fight to limit research of its DNA. in New York Times (New York Times, New York, 2010).
2. Cohen, E. The government has your baby’s DNA. in Empowered Patient (CNN, 2010).
3. Root, J. Texas officials agree to destroy babies’ blood samples after settling lawsuit. in Dallas Morning News (Dallas Morning News, Dallas, TX, 2010).
4. Skloot, R. The Immortal Life of Henrietta Lacks, (Random House, Inc., New York, 2010).
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