So You Think You Know Who's the "Legally Authorized Representative": Clinical Research Hits a Snag.

When a prospective participant in clinical research appears perhaps to lack decision-making capacity, many investigators do a capacity evaluation themselves, and if the person lacks capacity, reach out to the next of kin, presuming them to be the legally authorized representative (LAR) to consent (o...

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Publicado en:Journal of Law, Medicine & Ethics Vol. 54; no. 1; pp. 69 - 85
Autor principal: Morreim, Haavi
Formato: review tables/charts Journal Article
Publicado: Cambridge University Press Spring2026
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Spring2026
      vid: 54
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      pub: Cambridge University Press
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        10.1017/jme.2026.10228
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        atl: So You Think You Know Who's the "Legally Authorized Representative": Clinical Research Hits a Snag.
      aug:
        au: Morreim, Haavi
        affil: Department of Internal Medicine, College of Medicine, UTHSC, United States
      sug:
        subj:
          Clinical Research Ethical Issues
          Research Subjects Legislation and Jurisprudence
          Competence (Legal) Evaluation
          Consent (Research) Legislation and Jurisprudence
          Institutional Review Legislation and Jurisprudence
          Clinical Research Legislation and Jurisprudence
          Proxy Legislation and Jurisprudence
          Research Ethics
          United States
          Clinical Research History
          Research Subjects Ethical Issues
          Health Policy
          Protection of Human Subjects
          Counseling
          Research, Medical Legislation and Jurisprudence
          Research Personnel
          Health Care Delivery
          Medical Staff, Hospital
          Supervisors and Supervision
          Decision Making Legislation and Jurisprudence
          Competence (Legal) Ethical Issues
          Special Populations
          Proxy Ethical Issues
          Health Insurance Portability and Accountability Act
      ab: When a prospective participant in clinical research appears perhaps to lack decision-making capacity, many investigators do a capacity evaluation themselves, and if the person lacks capacity, reach out to the next of kin, presuming them to be the legally authorized representative (LAR) to consent (or not) on that person's behalf. However, that approach often does not actually comport with applicable law. This article begins with some history, explaining how, if there is no state law specifically governing clinical research, Institutional Review Boards have been instructed to base their policies concerning capacity determination and surrogacy selection on that jurisdiction's laws governing ordinary healthcare. A deep dive into many states' statutes reveals a remarkable, hitherto largely unrecognized diversity of provisions that, in turn, create unexpected legal and ethical hazards for investigators whose research participants may lack capacity. Several potential resolutions are suggested.
      pubtype: Academic Journal
      doctype:
        review
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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