Participants and Study Decliners' Perspectives About the Risks of Participating in a Clinical Trial of Whole Genome Sequencing
| Autor: | Amy L. McGuire, Lindsay Z. Feuerman, Lily B. Hoffman-Andrews, Rebecca C. Walsh, Denise L. Perry, Jill O. Robinson, Kurt D. Christensen, Robert C. Green, Thomas M. Carroll |
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| Rok vydání: | 2017 |
| Předmět: |
0301 basic medicine
Adult Male Risk medicine.medical_specialty Biomedical Research Social Psychology Adolescent Genome Article Education 03 medical and health sciences Young Adult Informed consent Surveys and Questionnaires medicine Humans Young adult Precision Medicine Aged Whole genome sequencing Aged 80 and over Motivation Informed Consent business.industry Communication Sequence Analysis DNA Middle Aged Precision medicine Clinical trial 030104 developmental biology Attitude Family medicine Female business Social psychology |
| Zdroj: | Journal of empirical research on human research ethics : JERHRE. 11(1) |
| ISSN: | 1556-2654 |
| Popis: | 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 514 individuals recruited, 173 (34%) actively declined, 205 (40%) enrolled, and the remaining 136 (26%) were ineligible, unresponsive or waitlisted. Although the majority of active decliners cited logistical barriers, 40% cited risks related to the ethical, legal, and 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. |
| Databáze: | OpenAIRE |
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