Patient perspectives on research use of residual biospecimens and health information: On the necessity of obtaining societal consent by creating a governance structure based on value-sharing

Autor: Mayumi Yamanaka, Mika Suzuki, Keiko Sato
Jazyk: angličtina
Rok vydání: 2021
Předmět:
Zdroj: Research Ethics Review, Vol 17 (2021)
Druh dokumentu: article
ISSN: 1747-0161
2047-6094
17470161
DOI: 10.1177/1747016120914331
Popis: Very few attempts have been made to survey patient opinions, particularly regarding the use of residual biospecimens and health information in research, to clarify their values. We conducted a questionnaire survey that targeted outpatients of a university hospital to gauge their awareness levels and understand patient perspectives on research that uses these items. Few patients felt that obtaining individual consent for each research study was necessary. Most patients expressed the view that researchers should be obligated to inform them about the research use of their items and be subject to self-directed rules (including sanctions). The research community should try to obtain “societal consent regarding an opt-out system” from the public. A salient value-sharing-based governance structure is necessary for obtaining public trust.
Databáze: Directory of Open Access Journals
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