Offering results to research participants

Communicating clinical trial results to research participants.

BACKGROUND Communicating clinical trial results to research participants is seldom accomplished in a timely or an effective manner. OBJECTIVE To evaluate the effectiveness of a plan to communicate results in an industry-sponsored randomized controlled trial for Huntington disease. DESIGN, SETTING, AND PARTICIPANTS Postal survey to research participants at 28 of 41 research sites (including ...

Disclosing individual genetic results to research participants.

Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected infor...

Offering individual genetic research results: context matters.

The disclosure of individual genetic research results to study participants continues to be the subject of vigorous debate, centered primarily on the nature of the results. We suggest that research context, which is foreseeable when a study is designed, is a vital consideration that has not been sufficiently incorporated into the discussion. Adapting an ancillary care framework to explore what ...

Offering results to research subjects: U.S. Institutional Review Board policy.

BACKGROUND This study aims to determine the nature of United States Institutional Review Board (IRB) policy in a broad spectrum of research settings regarding the return of results to study participants. METHOD IRB policies or standard operating procedures of 207 Medical School, Industry and Non-medical School IRBs were examined on-line to determine if they incorporated specific reference to ...

Disseminating research results to research participants and their communities.