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...

Descripción completa

Detalles Bibliográficos
Publicado en:Hastings Center Report Vol. 51; no. 2; pp. 22 - 33
Autores principales: Morain, Stephanie R., Largent, Emily A.
Formato: Artículo
Publicado: Wiley-Blackwell Mar2021
Materias:
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