Between 1990 and 1994, John Martin and Therese Markow collected DNA samples from 400 members of the Havasupai tribe for a diabetes project being conducted by Arizona State University (ASU).
The Havasupai are an American Indian tribe who have lived in the Grand Canyon and have high rates of type II diabetes.
[1] Because of a desire to better understand the high rates of diabetes, members of the tribe willingly gave blood samples to ASU under the assumption that it would be used for genetic testing.
In 2003, a member of the Havasupai tribe named Carletta Tilousi discovered that the blood samples given to ASU were not being used for diabetes testing.
[5] The return of the samples was the most important part for the tribe because blood and DNA are sacred material for Havasupai culture and personhood.
Although no legal precedents have been set, this case had brought to light the need for ethical research practices especially with regards to Native American communities.
It was discovered that the DNA samples extracted from the Havasupai tribe members that were initially intended to go towards research regarding the genetic linkage to type 2 diabetes in the 1990s, were being used for additional studies.
[2] This case was brought to court by Carletta Tilousi, who had discovered that the DNA samples were being used for additional tests by third-party groups without the tribe's consent.
This court case resulted in many long-term effects as the Havasupai tribe gained and lost a variety of factors throughout this time period.
[2] After finding out the researchers at Arizona State were using the genetic material for these studies without consent, she informed the Havasupai tribe members.
David Karp, associate professor of internal medicine at the University of Texas Southwestern Medical Center stated, "Everyone wants to be open and transparent ... the question is how far do we have to go?
Many scientists agreed with Karp ,mentioning that once written consent is given for DNA use, they should not have to contact the individual every couple of years for a new research study.
As a result of this, Havasupai led to no formal legal precedents pertaining to the secondary use of medical samples or informed consent procedures.
Since the Havasupai case, many tribes have even prohibited participation in medical research in order to protect themselves and their cultural beliefs and values.
Author Nanibaa' Garrison argues that there needs to be increased levels of education on informed consent for both researchers and study participants.
Similarly, various other authors and academics have argued for increased justice and equity in genetic research involving indigenous populations.
Katherine Drabiak-Syed, for example, argues for the recognition of legitimate cultural harms in research, and for processes to be implemented to avoid these injustices in the future.
[14] And finally, David S. Jones argues that the ongoing persistence of American Indian health disparities in the United States signify social injustice for these populations.
[15] According to these scholars, it is necessary that medical researchers begin to put in place procedures that minimize the exploitation and abuse of native populations during studies.
[18] These cases each looked at the importance of informed consent and the secondary use of laboratory samples; however no formal precedent was put in place to prohibit medical researchers from exploiting vulnerable populations.