Necessity, Rights, and Rationing in Compulsory Research.

bioethics compulsion necessity participation rationing research research ethics rights

Journal

The Hastings Center report
ISSN: 1552-146X
Titre abrégé: Hastings Cent Rep
Pays: United States
ID NLM: 0410447

Informations de publication

Date de publication:
05 2022
Historique:
entrez: 28 6 2022
pubmed: 29 6 2022
medline: 1 7 2022
Statut: ppublish

Résumé

In "Compulsory Research in Learning Health Care: Against a Minimal Risk Limit," Robert Steel offers an argument in favor of compelling individuals to participate in some research that poses more than minimal risk. In his view, the ethics of compulsory research turns on questions of fair distribution of benefits and burdens, within a paradigm analogous to health care resource rationing. We do not dispute that it may theoretically be permissible to compel participation in certain circumstances, including those that rise above minimal risk. Nevertheless, Steel's argument for this conclusion faces several challenges that ultimately render it unconvincing in its present form. First, compulsion should be subject to a "necessity" criterion, which substantially limits its applicable scope. Second, compulsion is a prima facie rights violation that requires stronger ethical justification than Steel offers. And third, substantial structural and motivational differences between rationing and compulsion render the analogy inapt.

Identifiants

pubmed: 35763206
doi: 10.1002/hast.1394
doi:

Substances chimiques

Steel 12597-69-2

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

31-33

Subventions

Organisme : National University Health System Internal Grant Funding
ID : NUHSRO/2020/138/Startup/07

Informations de copyright

© 2022 The Hastings Center.

Références

R. Steel, “Compulsory Research in Learning Health Care: Against a Minimal Risk Limit,” Hastings Center Report 52, no. 3 (2022): 18-29.
G. O. Schaefer, “The Obligation to Participate in Biomedical Research,” Journal of the American Medical Association 302, no. 1 (2009): 67-72; A. Ballantyne and G. O. Schaefer, “Consent and the Ethical Duty to Participate in Health Data Research,” Journal of Medical Ethics 44, no. 6 (2018): 392-96.
Council for International Organizations of Medical Sciences and World Health Organization, International Ethical Guidelines for Health-Related Research Involving Humans (Geneva: CIOMS, 2016), https://cioms.ch/publications/product/international-ethical-guidelines-for-health-related-research-involving-humans/.
Steel, “Compulsory Research in Learning Health Care,” 21.
Ibid., 22.
J. C. d'Oronzio, “A Human Right to Healthcare Access: Returning to the Origins of the Patients’ Rights Movement,” Cambridge Quarterly of Healthcare Ethics 10, no. 3 (2001): 285-98.
Steel, “Compulsory Research in Learning Health Care,” 23-24.
E. Vayena and J. Tasioulas, “The Dynamics of Big Data and Human Rights: The Case of Scientific Research,” Philosophical Transactions of the Royal Society A: Mathematical, Physical and Engineering Sciences 374, no. 2083 (2016): doi:10.1098/rsta.2016.0129.
Steel, “Compulsory Research in Learning Health Care,” 24-25.
W. Mariner, “Rationing Health Care and the Need for Credible Scarcity: Why Americans Can't Say No,” American Journal of Public Health 85, no. 10 (1995): 1439-45.

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