Voluntariness of Consent to Research: A Conceptual Model

College of Physicians and Surgeons, Columbia University, USA.
The Hastings Center Report (Impact Factor: 1.08). 01/2009; 39(1):30-9. DOI: 10.1353/hcr.0.0103
Source: PubMed

ABSTRACT A good deal of policy and practice in human subjects research aims to ensure that when subjects consent to research, they do so voluntarily. To date, however, voluntariness and its impairment have been poorly conceptualized and studied. The legal doctrine of informed consent could provide a useful model.

Download full-text


Available from: Robert Klitzman, Jun 19, 2015
  • Source
    • "A preliminary empirical investigation into the voluntariness of consent to research demonstrated that participants indicated that " trust in the people doing the research . . . [was] frequently cited as important motivations across all categories of respondents " as a reason for research participation (Appelbaum, Lidz, and Klitzman 2009). "
    The American Journal of Bioethics 03/2010; 10(3):18-9. DOI:10.1080/15265160903581783
  • [Show abstract] [Hide abstract]
    ABSTRACT: One moot point in bioethical debates about genetic testing concerns the conditions that have to be fulfilled to make individual genetic testing or individual participation in genetic screening programs truly voluntary. Though there is a relatively broad consensus about the non-viability of views on the extremes of the spectrum of opinions, there is considerable disagreement in the middle. This mirrors the difficulties in defining satisfactory demarcation lines between autonomous choice, pressured choice and coercion in cases in which the decision to participate is triggered, wholly or partly, by factors such as material incentives, urgent health needs, massive social expectations, or moral pressure from relatives. In this contribution, some of the semantic conditions and ethical principles concerning coercion are explored with a view to applying them to genetic testing, especially in the context of insurance and participation in clinical trials.
    Medicine Studies 06/2009; 1(2):95-104. DOI:10.1007/s12376-009-0012-x
  • [Show abstract] [Hide abstract]
    ABSTRACT: Coercion by the recipient of consent renders that consent invalid. But what about when the coercive force comes from a third party, not from the person to whom consent would be proffered? In this paper I analyze how threats from a third party affect consent. I argue that, as with other cases of coercion, we should distinguish threats that render consent invalid from threats whose force is too weak to invalidate consent and threats that are legitimate. Illegitimate controlling third party threats render consent invalid just as they do in two party cases. However, knowing that the consent is invalid is not sufficient to tell the recipient of consent what she may or should do. I argue that when presented with a token of consent from someone whom she thinks is experiencing an illegitimate controlling threat, the recipient may act on that token if and only if doing so represents a reasonable joint decision for her and the victim of coercion. The appropriate action for someone faced with third party coercion therefore depends on the other options open to her and those open to the victim of coercion.
    Ethical Theory and Moral Practice 02/2013; DOI:10.1007/s10677-013-9419-2
Show more