- The ARC - California Edition -

Participation in Genetic Research

As part of a series of educational materials regarding Genetic Issues In Mental Retardation, The Arc of the United States has published a report presenting information to help our members obtain a better understanding of this incredibly exciting research, and to aid families make decisions about whether they should participate in genetic research.

This report, entitled "Participating in Genetic Research: Considerations for People with Mental Retardation and Their Families", describes the various types of genetic research, the benefits, and the risks of participation. Included is a discussion of the issues related to informed consent of individuals with impaired decision-making skills, such as mental retardation.

The goal of The Arc’s project is to promote education and discussion of the ethical, legal and social concerns resulting from innovative genetic research.

A copy of this report is available through The Arc’s Home Page on the Internet: http://www.thearc.org/welcome.html. You may request a single printed copy via mail by sending a stamped-self-addressed envelope to: The Arc of the U.S., 500 E. Border, Suite 300, Arlington, TX., 76010.


Key Points: "Participating in Genetic Research: Considerations for People with Mental Retardation and Their Families";
Volume 3, Number 1; Genetic Issues In Mental Retardation.

Genetic research involves the study of inherited human traits. It includes discovering the pattern of inheritance in families, identifying specific genes, developing genetic tests and conducting gene therapy. Genetic information about an individual may be information about other family members.

People who participate in genetic research may benefit from receiving a new treatment, gaining access to specialized care or receiving satisfaction from advancing the understanding of a genetic disorder. However, research participation may also involve risks, including social and psychological harm and physical injury.

Researchers must obtain informed consent from people considering participation in genetic research studies. There is concern about the use and effectiveness of informed consent among people with impaired decision-making, such as mental retardation.

Federal law places responsibility on Institutional Review Boards (IRBS) to ensure protection of individuals with mental retardation and other mental disorders who are research subjects.

The National Bioethics Advisory Committee’s draft report on involving people with impaired decision-making in research advises a number of recommendation for IRBS to ensure the safety of those with mental disorders.

The Alliance of Genetic Support Groups developed a list of questions to assist family members in deciding whether or not to participate in genetic research.