Genetic research projects often take place in hospitals and university medical centers. An IRB includes both scientists and non-scientists, such as clergy, community representatives, social workers, ethicists, lawyers, and nurses. The purpose of the IRB review is to assure that the interests of individuals participating in the research are well protected. However, the decision to participate is yours to make, and the informed consent process that precedes each study is designed to help you make your choice as freely as possible. When researchers seek your consent, they are asking for your voluntary agreement to take part in a test, procedure, or research study.
Informed consent means more than signing a written or printed consent form.
This brochure is about informed consent for genetic research studies, and it also can help with informed consent for genetic tests and procedures. To be informed, you need to know about benefits and risks of the research and how it may affect you, your family, and society. The research team should give you the information you need to make your own decision. Sometimes it is a good idea to talk about your decision with someone else not involved in the project. This person can be a family member, a good friend, or anyone you trust and respect and with whom you feel comfortable in discussing personal matters.