Participants as Partners in Genetic Research
This chapter focuses on subject-centered developments in genetic research. Modern genetic research requires scientists to collect, store, and study DNA samples and health information from thousands of people. In the past, researchers have been allowed to use DNA samples and information without consent. Researchers have not been required to explain study results to subjects, nor have they been required to compensate people who contribute samples and health information to genetic studies. Experts developed these practices without input from the people whose contributions are essential to the genetic research enterprise. A growing amount of evidence shows that many research subjects and prospective subjects disagree with these traditional approaches. For ethical and practical reasons, subjects should have a greater role in determining how genetic research is conducted.