"Human Subjects in Genetics Research Involving Families: Points to Consider."
Conference held in 1992 on the NIH Campus in Bethesda, Maryland.
(Co-Sponsored with OPRR and NIMH)

The NCHGR, the NIH Office for Protection from Research Risks (OPRR) and the National Institute of Mental Health (NIMH) convened this working group to develop improved guidance for investigators and research review boards considering genetic studies involving families. Five commissioned papers informed the discussion. The workshop participants recommended that research data be collected on stigmatization and discrimination from association with a research family, recruiting relatives into a study, and the best way to ensure that an individual's genetic make-up is kept confidential. The report of this group was distributed directly to the genetics research community, research institutions, and the networks of families with whom they work.

NCHGR/CDC Informed Consent for Genetics Research Using Stored Tissue Samples
Meeting held July 7 and 8, 1994 on the NIH campus in Bethesda, Maryland.
(Co-sponsored with CDC)

The purpose of this workshop was to examine the current policies regarding the use of stored tissue samples for genetic studies and to develop guidance for use by institutions and state and federal agencies in formulating their own policies regarding the use of such samples. The primary focus of this meeting was in the area of obtaining informed consent for the use of stored tissue samples for genetics research.

"Genetics Research on Human Tissues: Conflicting Implications for Scientific Discovery and Informed Consent and Privacy."
Meeting held January 19, 1996 on the NIH campus in Bethesda, Maryland.
(Co-sponsored with AAMC)

The purpose of this meeting was to bring together representatives from the pathology community with a group of individuals who have been involved in developing policy recommendations regarding informed consent and genetic privacy when human tissue samples are being used for genetics research. This meeting provided an opportunity for sharing information and for the open exchange of ideas. The meeting opened the lines of communication for further dialogue that will lead to agreements that respect the rights and needs of all of the diverse stakeholders.

"Informed Consent in Research Involving Human Participants Request for Applications and Research Consortium"
September, 1996 (Trans-Agency Initiative)

In September 1996, the NIH Office of Extramural Research (OER) announced a special Request for Applications (RFA) focusing on "Informed Consent in Research Involving Human Participants." The goal of this initiative is to identify and validate methods for improving the informed consent process in scientific research. Coordinated by OER, this inter-departmental and trans-NIH program is being co-sponsored by a number of NIH components, including the National Cancer Institute (NCI), the National Human Genome Research Institute (NHGRI), the National Institute on Aging (NIA), the National Institute of Allergy and Infectious Diseases ((NIAID), the National Institute on Alcohol Abuse and Alcoholism (NIAAA), the National Institute of Child Health and Human Development (NICHD), the National Institute on Drug Abuse (NIDA), the National Institute of Mental Health (NIMH), and the National Institute of Nursing Research (NINR). In addition, The Department of Energy and the Department of Veterans Affairs (VA) have joined NIH in sponsoring this program. Eighty-two applications were received in March 1997 and the 13 top-rated applications were funded in the Fall of 1998. A first meeting of the consortium of grantees was held March 19-20, 1998. The grantees will continue to meet annually throughout the three-year life of these projects in order to report progress, discuss problems, and share information related to the conduct of their grants.

"Informed Consent in Human Subjects Research"
October 22, 1998 Conference at Tennessee Technological University (Co-funded with DOE)

The proposed conference, "Informed Consent in Human Subjects Research", is a one day conference designed to provide pertinent technical and educational information on the importance of informed consent to scientific investigators at Tennessee Technological University and the greater community engaged in research involving human subjects. Special emphasis will be placed on the impact of psychosocial/genetic research involving individuals who are minors and/or mentally challenged. A main focal point will be that research does not need to include invasive procedures for informed consent to be important in the protection of human subjects. Conference attendees will be largely recruited from rural Central Tennessee and a portion of East Tennessee from Clarksville to Johnson City. School systems and various agencies and groups will be informed about the conference and invited to participate. As a result of this conference, participants will obtain a more clear understanding of the informed consent process and its importance to the research enterprise.