How could the researchers have avoided this unfortunate situation?

How could the researchers have avoided this unfortunate situation?

A group of researchers, consisting of anthropologists, geneticists, and physicians, identifi ed a rare genetic disease in an indigenous population of Native Americans (the Beewoks) living on coast of western Canada. People who have the disease (known Wajan’s disease) have 12 fi ngers and 12 toes, white hair, blue eyes, and enlarged hearts. People with Wajan’s disease usually die before age 25 as a result of heart failure. The Beewoks do not regard this condition as a disease. They believe that people who are born with this condition are blessed by the gods and have special gifts of empathy, prophecy, and spiritual healing. They also believe that people with this condition have been a part of the population since the beginning of time. The Beewoks also believe that they have always lived on the place where they are currently living. After studying Wajan’s disease, its genetics, and the population, the researchers publish an article describing and explaining the condition and its history in the local population. They refer to the condition as a “disease” and an “illness.” They say that the people with Wajan’s disease have “weak hearts.” They also claim that the Beewoks share many unique genetic variants with Eskimos in northern Alaska, and that it is likely that the Beewoks migrated from northern Alaska less than 500 years ago. A local newspaper prints a story about the scientifi c article. Some of the leaders of the Beewok population learn about the results of the research from the local paper, and they are very upset about how people with the disease are portrayed and how the population and its history are described. They demand that the researchers return their blood samples, and they do not want the researchers to publish any more articles about them. They also say that they will never allow any scientists to study them again.

• How could the researchers have avoided this unfortunate situation?

• What steps should they have taken to protect the Beewoks and promote their interests?



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