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  1. 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.Mayumi Yamanaka, Mika Suzuki & Keiko Sato - 2021 - Research Ethics 17 (1):103-119.
    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 (...)
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  • Public expectations for return of results from large-cohort genetic research.Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy & Kathy Hudson - 2008 - American Journal of Bioethics 8 (11):36 – 43.
    The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced (...)
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  • Population attitudes towards research use of health care registries: a population-based survey in Finland.Katariina Eloranta & Anssi Auvinen - 2015 - BMC Medical Ethics 16 (1):48.
    Register-based research can provide important and valuable contributions to public health research, but involves ethical issues concerning the balance of public health benefits and individual autonomy. This study aimed to describe the opinions of the Finnish public about these issues.
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  • Focus group interviews examining attitudes towards medical research among the japanese: A qualitative study.Atsushi Asai, Motoki Ohnishi, Etsuyo Nishigaki, Miho Sekimoto, Shunichi Fukuhara & Tsuguya Fukui - 2004 - Bioethics 18 (5):448–470.
    ABSTRACT Objectives: the purpose of this study is to explore laypersons’ attitudes towards and experiences of medical research, and to compare them with those of physicians in Japan. Designs and Participants: fourteen Japanese adults from the general public and seven physicians participated in one of three focus interviews. Setting: Osaka, Japan. Results: trust and distrust in the physician by whom the participants were invited to participate in research played a considerable role in their decisions about participation. That the participants felt (...)
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