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Case: The Tawa

A previously unknown tribe in Papua-New Guinea, the Tawa was found to have an average adult height of 36 inches despite adequate nutrition. After the first report of discovery, the research community expressed an intense interest in studying the Tawa genetically, physiologically, sociologically, and psychologically as well as to determine whether they can be helped to attain greater height by medication.

Similarly, the media developed a most intense interest in televising the tribe to produce news stories and documentaries.

Access to these people was put under control of Papua-New Guinea Interior Minister who happened to be a physician educated in Australia. She wanted very much to do the right thing and was fearful that without careful control, chaos would ensue. An influx of Westerners however, would be a great shot in the arm to Papua New Guinea's weak economy.

She decides to hire you as the reigning expert to advise her and the tribe. You make a trip with your interpreter by jeep, donkey, and foot, mainly up hill and make acquaintance with the 80 members of the tribe.

You are sure that the tribe has a selective defect in the growth hormone-IGF1 axis that will be very interesting, and that the tribe's isolation for many generations makes genomic study very interesting. It would also be valuable to use the opportunity of drawing blood to investigate their cardiovascular risk factors and susceptibility to infections.

In fact, the number of valuable studies immediately conceivable was enormous.

Questions:
  1. Is it ethical to conduct research on the Tawa? Elaborate on the background issues that will help you to decide?
  2. The concepts of writing, blood drawing, research and questionnaires are unknown to the Tawa. Although they have language, it is limited to 500 words or so and does not include many specifics. How are you going to explain to them what research and genetic research are?
  3. The tribe is a vulnerable population. Is there a way of getting a surrogate to stand for them in understanding planned research?
  4. What will you write in your report to the Interior Minister?

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Chapter 6
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International Clinical Research

Underlying Conditions

Approval and Monitoring Issues

Study Population Issues

Structural Issues

Epidemiological and Social Science Research

Cases

Bibliography


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