David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jack Alan Reynolds
Learn more about PhilPapers
Bioethics 26 (2):60-67 (2012)
It is widely held that individuals who are unable to provide informed consent should be enrolled in clinical research only when the risks are low, or the research offers them the prospect of direct benefit. There is now a rich literature on when the risks of clinical research are low enough to enroll individuals who cannot consent. Much less attention has focused on which benefits of research participation count as ‘direct’, and the few existing accounts disagree over how this crucial concept should be defined. This disagreement raises concern over whether those who cannot consent, including children and adults with severe dementia, are being adequately protected. The present paper attempts to address this concern by considering first what additional protections are needed for these vulnerable individuals. This analysis suggests that the extant definitions of direct benefits either provide insufficient protection for research subjects or pose excessive obstacles to appropriate research. This analysis also points to a modified definition of direct benefits with the potential to avoid these two extremes, protecting individuals who cannot consent without blocking appropriate research
|Keywords||vulnerable subjects fallacy of the package deal informed consent direct benefits|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
Eric Chwang (2014). Shared Vulnerabilities in Research. American Journal of Bioethics 14 (12):3-11.
Similar books and articles
Angela Ballantyne (2008). Benefits to Research Subjects in International Trials: Do They Reduce Exploitation or Increase Undue Inducement? Developing World Bioethics 8 (3):178-191.
Andrew D. McRae & Charles Weijer, Lessons From Everyday Lives: A Moral Justification for Acute Care Research.
Dave Wendler (2000). Informed Consent, Exploitation and Whether It is Possible to Conduct Human Subjects Research Without Either One. Bioethics 14 (4):310–339.
Joanna Różyńska & Marek Czarkowski (2007). Emergency Research Without Consent Under Polish Law. Science and Engineering Ethics 13 (3):337-350.
Michelle H. Biros (2007). Research Without Consent: Exception From and Waiver of Informed Consent in Resuscitation Research. Science and Engineering Ethics 13 (3):361-369.
David Wendler & Christine Grady (2008). What Should Research Participants Understand to Understand They Are Participants in Research? Bioethics 22 (4):203–208.
Rona Abramovitch, Jonathan L. Freedman, Kate Henry & Michelle Van Brunschot (1995). Children's Capacity to Agree to Psychological Research: Knowledge of Risks and Benefits and Voluntariness. Ethics and Behavior 5 (1):25 – 48.
David Wendler (2012). A New Justification for Pediatric Research Without the Potential for Clinical Benefit. American Journal of Bioethics 12 (1):23 - 31.
Added to index2010-05-18
Total downloads17 ( #204,370 of 1,790,292 )
Recent downloads (6 months)1 ( #429,817 of 1,790,292 )
How can I increase my downloads?