Julie A. Burger


The legal and ethical protections afforded human subjects of research afford individuals who participate in research certain rights. Potential participants must give voluntary and informed consent to participate, they have the right to withdraw from research, they cannot be asked to waive certain rights, and they have the right to choose which studies they will participate in. But researchers, institutions, patient advocacy groups, and ethicists continue to debate how these rules should be applied in the context of genetics research—projects that involve using the individual's tissue or the individual's genetic information, such as gene sequences, and associated medical information. Evidence demonstrates that people have strong feelings and preferences about how their tissue and genetic information is used in research and who has access to it, regardless of whether their name is associated with the sample or information. Not giving due import to individuals' preferences could result in a loss of trust in the research enterprise, and a corresponding decrease in participation in future studies.

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