What is Informed Consent? from NCDHR

The mission of NCDHR at the University of Rochester is to promote health and prevent disease in Deaf and hard-of-hearing populations through Community-Based Participatory Research (CBPR).

Suppose you saw an advertisement saying that a team of researchers is looking for individuals to participate in a research study and you contacted them indicating that you would like to participate. You will be given an "informed consent" form to read and sign your name before enrolling into the study.

What exactly is informed consent? Informed consent provides information for an individual to decide whether he or she wants to participate in a research study. The information should be easily understood and described in that individual's preferred language. For example, the information in the informed consent form for Deaf people can be shown in written English and/or in ASL video. Information includes a full description of the research study, what are the risks (or discomforts) and benefits to the study participant, how confidentiality will be
handled, and who to contact if there are questions. If the individual has questions about the research study, or is not clear about something in the informed consent, he or she can ask the researchers for clarification. The individual, after reviewing the information, then can make his or her own decision to participate in a study, or not. The decision must be made freely - with no pressures, fear, or improper influences. If the individual decides not to participate in the research study, there will be no penalty of any kind.

Informed consent is required by federal law and it is designed to protect people interested in participating in a research study. Sometimes individuals do not bother to ask questions because they may feel their questions are "not too smart." There are no stupid questions! You have a right to know everything about the research study. The
individual is strongly encouraged to discuss the informed consent with family members, friends or advocates, and the researchers. Always keep a copy of the informed consent, but keep in mind that informed consent is not a contract. If the individual did agree to participate in the research study, but then decides later to drop out, again, there will be no penalty.

Also important; informed consent helps you learn more about the research study. You have a right to ask questions before, during, and after a research study. Any time!

Category:

Science & Technology

Tags:

• NCDHR
• Deaf
• ASL
• Research
• Informed Consent