A dispute between researchers and a small Native American tribe has cast an unduly large shadow over genetics. Both sides have much to gain from deeper communication, aided by those who belong to both communities.
Native Americans in the southwestern United States are in conflict with researchers over a genetics study. The Havasupai tribe has engaged scientists and universities in a legal battle over a diabetes research project. The tribe's lawsuits allege that researchers from Arizona State University and other institutions used DNA for studies without proper consent. The project's leader emphatically denies this, and researchers are stunned at the allegations about their (as they see them) benevolent efforts.
Politically charged interpretations of the dispute have spread through Native American communities, fanning tribal distrust of academics. Ill-founded rumours are the last thing that tribes and scientists need at this promising time for genomic research.
Such studies last for years, and the dispute highlights the importance of researchers keeping in constant communication with their Native American research subjects throughout (see page 500). History has shown that a court of law is not a good forum for resolving ethical debates. But how to balance the need for sensitivity to tribal culture while fostering rigorous scientific inquiry?
Some tribes now maintain their own human-subjects committees, which must approve all research projects. There are advisory committees to assist groups in monitoring projects whose complexities are difficult for non-scientists to understand. And there are proposals for Native American gene banks controlled and monitored by the tribes themselves—a concept that could provide them with ownership of products that may be derived from their genes.
All of these initiatives offer promising opportunities, but they also come with responsibilities for both researcher and subject. If subjects want to know what the researchers are trying to accomplish, and are kept informed, clashes of culture and science may be prevented. Moreover, there have been a growing number of instances in which repeat consent was sought from research subjects from special communities, where language and cultural barriers may complicate projects. While worthy, this concept — time-consuming and potentially costly — would be unnecessary if there was a regular two-way flow of information between researchers and subjects.
Some ethicists suggest that an obsession with the details of consent have caused research subjects to forget they have an opportunity to help not only their own tribe, but all mankind. For Native Americans, this is a hard concept to accept. Having seen their people and cultures abused for centuries, they are understandably hypersensitive. But it could be a new form of empowerment for them to realize that their culture helped cure a disease.
Today, many Native American tribes have economic opportunities they never dreamed of, including education and access to scholarships. Gaming revenues provide better community services and chances to eliminate the sicknesses of poverty that for generations have plagued reservations. But too often this new-found economic clout is used to further litigation for tribal political purposes. In Arizona, sensitive, caring scientists are privately saying they do not want to go anywhere near a reservation after recent events in the Havasupai case. Given the broader potential benefits of research, this cannot be a climate that tribes wish to foster.
Leaders from both communities need to reach out to each other to bridge the gap between their cultures. The National Human Genome Research Institute is funding work to do precisely this. One group in a unique position to help are Native American scientists: they too can support dialogues to create a research environment to match the genetic opportunities of the times.
