Where'd You Go With My DNA?

     According to the New York Times this article, shows the cultural gap between the impoverished Havasupai Indians who view their blood as sacred and the Arizona state university researchers who helicoptered in to their Grand Canyon home to collect it was at the heart of a lawsuit over the scope of a genetic study that ended a few weeks ago with a settlement for the tribe.Issues surfaced recently among a range of research subjects who have learned that their genetic material is being used in ways they weren’t consulted about. A proposal of an international tribunal akin to the Helsinki human rights agreement, which would lay out the ethical obligations to research participants.Courts have ruled that individuals do not have a property right to their cells once they are taken in the course of medical care, under federal guidelines, you do have a right to know how they will be used. A controversial matter is the fact that, is their a possibility of DNA data remaining anonymous.
     The issue with Havasupai case was whether an Arizona State geneticist had obtained permission from tribal members to use their DNA for anything other than finding reasons for type 2 diabetes in their tribe. Over   200 of the 650 member tribe signed a consent form stating that their blood could be used to “study the causes of behavioral/medical disorders,” but many said they had believed they were donating it only for the study of diabetes, which tribal members suffer from at extremely high rates.

     It is interesting that the tribal member's are offended that the researches used their DNA for genes involving with schizophrenia and other human diseases. I do believe individuals should have a right to know what their DNA are being used for, even if techniquely this tribe would have never found out, only due to a professor from the university that notified a tribe member. There's also a debate if these concluding results should be a part of public record. Although, approximately more than 90 percent of individuals involved in research are willing to allow their data to be used for a range of biomedical research. The underlying issue is, when the individual is not asked and find out later that they find out their results elsewhere other than was the initial agreement was. What happens when federal and/or grant money has already been spent on the research? A solution to this, is to train scientists to communicate with the public and include them on progresses/explanations to avoid ethical issues.

For more information pertaining to this lawsuit please visit, http://genetics.ncai.org/case-study/havasupai-Tribe.cfm.