Details

Autor(en) / Beteiligte

• Robinson, Jill Oliver
• Carroll, Thomas M.
• Feuerman, Lindsay Z.
• Perry, Denise L.
• Hoffman-Andrews, Lily
• Walsh, Rebecca C.
• Christensen, Kurt D.
• Green, Robert C.
• McGuire, Amy L.

Titel

Participant and study decliners’ perspectives about the risks of participating in a clinical trial of whole genome sequencing

Ist Teil von

• Journal of empirical research on human research ethics, 2016-02, Vol.11 (1), p.21-30

Erscheinungsjahr

2016

Quelle

Alma/SFX Local Collection

Beschreibungen/Notizen

• An increasing number of individuals are being recruited to whole genome sequencing (WGS) research. When asked hypothetically, the majority of the public express willingness to participate in this type of research, yet little is known about how many individuals will actually consent to research participation or what they perceive the risks to be. The MedSeq Project is a clinical trial exploring WGS in clinical care. We documented primary reason(s) for declining participation, and reviewed audio-recorded informed consent sessions to identify participants’ concerns. Of 511 individuals recruited, 173 (34%) actively declined, 205 (40%) enrolled, and the remaining 133 (26%) were ineligible or unresponsive. Although the majority of active decliners cited logistical barriers, 40% cited risks related to the ethical, legal, or social implications (ELSI) of WGS research. Participants similarly discussed ELSI-related concerns, but felt the potential benefits of participation outweighed the risks. Findings provide insight into the perspectives of potential WGS research participants and identify potential barriers to participation.