Public Attitudes toward Consent When Research Is Integrated into Care—Any "Ought" from All the "Is"?
Research that is integrated into ongoing clinical activities holds the potential to accelerate the generation of knowledge to improve the health of individuals and populations. Yet integrating research into clinical care presents difficult ethical and regulatory challenges, including how or whether...
| Publicado en: | Hastings Center Report Vol. 51; no. 2; pp. 22 - 33 |
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| Autores principales: | , |
| Formato: | Artículo |
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Wiley-Blackwell
Mar2021
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=149757979&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 149757979 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 00930334 HCR jtl: Hastings Center Report issn: 00930334 maglogo: Y pubinfo: dt: Mar2021 vid: 51 iid: 2 pid: 480 pub: Wiley-Blackwell artinfo: ui: 149757979 10.1002/hast.1242 ppf: 22 ppct: 11 formats: fmt: – @attributes: type: T – @attributes: type: P size: 327KB tig: atl: Public Attitudes toward Consent When Research Is Integrated into Care—Any "Ought" from All the "Is"? aug: au: Morain, Stephanie R. Largent, Emily A. su: Human research subjects Debate Medical care Informed consent (Medical law) Patients' attitudes Interprofessional relations Government policy Empirical research Public opinion Medical research Bioethics Trust sug: subj: Human research subjects Debate Medical care Informed consent (Medical law) Patients' attitudes Interprofessional relations Government policy Empirical research Public opinion Medical research Bioethics Trust Research and Development in the Physical, Engineering, and Life Sciences (except Biotechnology) keyword: empirical bioethics human subjects research oversight informed consent learning health systems pragmatic clinical trials empirical bioethics human subjects research oversight informed consent learning health systems pragmatic clinical trials ab: Research that is integrated into ongoing clinical activities holds the potential to accelerate the generation of knowledge to improve the health of individuals and populations. Yet integrating research into clinical care presents difficult ethical and regulatory challenges, including how or whether to obtain informed consent. Multiple empirical studies have explored patients' and the public's attitudes toward approaches to consent for pragmatic research. Questions remain, however, about how to use the resulting empirical data in resolving normative and policy debates and what kind of data warrants the most consideration. We recommend prioritizing data about what people consider acceptable with respect to consent for pragmatic research and data about people's informed, rather than initial, preferences on this subject. In addition, we advise caution regarding the weight given to majority viewpoints and identify circumstances when empirical data can be overridden. We argue that empirical data bolster normative arguments that alterations of consent should be the default in pragmatic research; waivers are appropriate only when the pragmatic research would otherwise be impracticable and has sufficiently high social value. pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
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