Guardianship and Clinical Research Participation: The Case of Wards with Disorders of Consciousness
| Autor: | Joseph J. Fins, Megan S. Wright, Michael R. Ulrich |
|---|---|
| Rok vydání: | 2017 |
| Předmět: |
Biomedical Research
media_common.quotation_subject Psychological intervention 0603 philosophy ethics and religion Federal law 03 medical and health sciences Legal Guardians 0302 clinical medicine State (polity) Legal guardian Common Rule Humans Medicine 030212 general & internal medicine health care economics and organizations media_common Research ethics business.industry 06 humanities and the arts General Medicine Therapeutic Human Experimentation United States humanities Law 060302 philosophy Guardian Consciousness Disorders Consciousness business |
| Zdroj: | Kennedy Institute of Ethics Journal. 27:43-70 |
| ISSN: | 1086-3249 |
| DOI: | 10.1353/ken.2017.0003 |
| Popis: | We review relevant federal law about research on human subjects and state laws on guardian authority to determine whether guardians can consent on behalf of their wards to participation in research. The Common Rule is silent on the issue as are most state guardianship laws. Our analysis shows significant variation in guardians' decision-making authority in the states that do regulate wards' participation in research.We consider how the appointment of guardians for patients with disorders of consciousness (DOC) impacts such patients' access to research. We assert that it is important that such persons be permitted to participate in research, so that their conditions and potential medical interventions can be studied, and that those with similar conditions can benefit from the knowledge gained from these studies. We argue that state guardianship laws should be adapted to specifically give guardians the authority to consent to research on behalf of wards who may be able to regain decisional capacity. |
| Databáze: | OpenAIRE |
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