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Croat Med J. 2001 Aug;42(4):450-6.

Informed consent in genetic research.

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  • 1Foundation for Genetic Medicine, Inc., 10900 University Boulevard, MSN 4E3, Manassas, VA 20110-2209, USA.


History demonstrates that, without adequate informed consent, research participants rights may be violated and their confidence in research as an enterprise undermined. If participants lose confidence in research, they may hesitate to participate in future research protocols. Without human participants to donate biological samples and participate in protocols, research will be difficult, if not impossible to conduct. Thus, appropriate informed consent protects both research participants and the enterprise of research itself. Informed consent principles in genetics not only help ensure the appropriateness of specific research protocols, but they also help support the continuation of all types of research on human participants. Most research involving human participants raises some issues fundamental to the informed consent process, such as whether potential participants truly understand the consequences of their participation in a study, and in which circumstances a person is competent to give consent. Advances in genetics are raising a new set of informed consent issues. The risks that may be involved in genetic research extend far beyond the standard considerations of immediate potential harm to study participants. Genetic information carries with it the possibility of uncovering a future propensity for a given illness. The disclosure of genetic information may lead to problems in obtaining health insurance, employment and/or housing discrimination, and to social and personal problems not only for participants, but also for their family members.

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