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ERIC Number: EJ1283756
Record Type: Journal
Publication Date: 2021-Jan
Pages: 17
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1747-0161
EISSN: N/A
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
Yamanaka, Mayumi; Suzuki, Mika; Sato, Keiko
Research Ethics, v17 n1 p103-119 Jan 2021
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.
SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://bibliotheek.ehb.be:2814
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Japan
Grant or Contract Numbers: N/A