An ethical dilemma
It’s at the core of ethical issues related to research with indigenous populations, says Ellen Wright Clayton, M.D., J.D., the Rosalind E. Franklin Professor of Genetics and Health Policy at Vanderbilt University.
“There are concerns that indigenous and isolated populations are being involved in research that may not ultimately be of benefit to them, that may go counter to their world view, that they may not understand,” she says. “There is any number of ways in which research with these populations becomes problematic.”
Clayton is leading a work group that aims to catalyze the development and adoption of a set of comprehensive ethical guidelines for researchers to use when studying indigenous or isolated populations. The group is unique in its composition, Clayton says. Anthropologists, political scientists, biomedical researchers, ethicists, and theologians are coming together to consider the issues.
“It’s important to really understand the full breadth of the problem, in all of its complexity and from a variety of different disciplinary perspectives, before we can even begin to come up with solutions that may be helpful,” Clayton says.
“We have to realize that we have a particular scientific world view of causation that may not be shared with indigenous populations,” she adds.
“We all have some degree of ethnocentric views,” says Mario A. Rojas, M.D., assistant professor of Pediatrics at Vanderbilt. “We have to check ourselves… in order to be able to sit down with people from other communities and different cultures, and work together to solve specific problems.”
That ‘sitting down and working together’ is essential, Clayton agrees. “We must engage with the indigenous groups and create partnerships that leave them at the end of the day not feeling like they’ve been taken advantage of,” she says.
“We have to be serious in thinking about what they’re going to get back. It may be a pharmaceutical that’s developed, a certain amount of the profits, or research and health care capacity. If you’re going to involve indigenous populations in research, then you have to confer some benefit to them.”
Partnerships and community engagement can be tricky to negotiate, cautions Clayton.
“Are you working with the right people in the group? Are those leaders keeping the interests of the group in mind? How do you think about informed consent in a hierarchical society? How do you think about research in a population that doesn’t give women an independent say?
“We have clear norms in the United States that don’t always overlay neatly on local norms,” she says. “We’re
currently in the debate about these issues.”
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