Abstract
The requirement of informed consent is central to research ethics. Translational stem cell research is one of those areas, however, where the choice to donate biological material is not likely to satisfy the criteria for a truly informed consent, due to the uncertainties about possible future research applications. The question arises whether so called broad consent, where the individual authorizes research usages that are specified only in rather broad terms, may morally legitimize the relevant research. This chapter argues that in order to settle this question, one first needs to adress certain other questions, in particular what the moral reasons are for requiring informed consent in the first place.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Notes
- 1.
The closest one gets to this is the negative requirement that the person does not object to participating.
- 2.
Certainly there are more complex options, too. For example, the idea of broad consent could be combined with the idea of conditional consent, where the potential research subject is offered the opportunity to prohibit certain uses of donated material. Discussing this particular option is beyond the scope of this chapter, but the general point that we make in the following is equally applicable to this more complex approach.
- 3.
It seems natural to first look into the moral foundation of more traditional forms of informed consent. After all, broad consent is typically believed to replace, or at least partly do the job of, these more traditional requirements. Having said this, it is important to emphasize that none of the claims or arguments in this chapter depends on this comparison. It may be the case that broad consent is morally distinct from what we here describe as traditional informed consent, in the sense that it could be justified in an entirely different way. Even so, the three steps still need to be taken, in the right order.
- 4.
To give a radical example taken from philosophy: it does not seem as if we are morally allowed to kill someone in order to take that person’s organs, even if we thereby will save the lives of several other persons in need of transplants [16].
- 5.
Obviously one needs not refer to religious beliefs to make the point. It might be the case, for example, that a person does not, on ethical or political grounds, want to participate in research funded by certain companies or other interests.
- 6.
It could be argued that this need not be a serious problem. After all, a person who is uncertain about whether participating will be in conflict with her considered values and beliefs, is free not to participate. That is, her autonomy is not violated by anyone. Still, this approach will not help her make an autonomous decision. And it is enabling autonomy that we are interested in here.
- 7.
We have elsewhere [18] argued that this is the case in the discussion surrounding surrogate decision making, and the substituted judgment standard.
References
WMA Declaration of Helsinki: Ethical principles for medical research involving human subjects, 2008. Available from: http://www.wma.net/en/30publications/10policies/b3/index.html
Milgram S. Obedience to authority: An experimental view. New York: Harper & Row; 1973.
Hansson MG, Dillner J, Bartram CR, Carlson JA, Helgesson G. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol. 2006 Mar; 7:266–9.
Petrini C. “Broad” consent, exceptions to consent and the question of using biological samples for research purposes different from the initial purpose. Soc Sci Med. 2010 Jan; 70:217–20.
Wendler D. One-time general consent for research on biological samples. BMJ 2006 Mar; 332:544–7 (4 Mar 2006).
Allen J, McNamara B. Reconsidering the value of consent in biobank research. Bioethics 2009. E-pub.
Caulfield T, Kaye J. Broad consent in biobanking: Reflections on seemingly insurmountable dilemmas. Med Law Int. 2009; 10:85–100.
Hofmann B. Broadening consent: Broadening consent and diluting ethics? J Med Ethics. 2009; 35:125–9.
Beauchamp TL, Childress JF. Principles of biomedical ethics. 5th ed. Oxford: Oxford UP; 2001.
Brekke OA, Sirnes T. Population biobanks: The ethical gravity of informed consent. BioSocieties 2006; 1:385–98.
Mill JS. On liberty. Oxford: Oxford University Press; 1991.
Ursin LØ. Personal autonomy and informed consent. Med Health Care Philos. 2009; 12:17–24.
O’Neill O. Autonomy and trust in bioethics. Cambridge: Cambridge University Press; 2002.
Kristinsson S. Autonomy and informed consent: A mistaken association? Med Health Care Philos. 2007; 10:253–64.
Manson NC, O’Neill O. Rethinking informed consent. Cambridge: Cambridge University Press; 2007.
Thomson JJ. The trolley problem. Yale L J. 1985; 94:1395–415.
Darwall S. The second-person standpoint. Morality, respect, and accountability. Cambridge: Harvard University Press; 2006.
Broström L, Johansson M. Surrogates have not been shown to make inaccurate substituted judgments. J Clin Ethics. 2009; 20:266–73.
Acknowledgments
An earlier draft of this chapter was presented at a workshop arranged by the Vårdal Institute, The Swedish Institute for Health Sciences. We are especially grateful to Barbro Krevers and Daniel Ekeblom for valuable comments.
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2011 Springer Science+Business Media, LLC
About this chapter
Cite this chapter
Broström, L., Johansson, M. (2011). Broad Consent. In: Hug, K., Hermerén, G. (eds) Translational Stem Cell Research. Stem Cell Biology and Regenerative Medicine. Humana Press, Totowa, NJ. https://doi.org/10.1007/978-1-60761-959-8_19
Download citation
DOI: https://doi.org/10.1007/978-1-60761-959-8_19
Publisher Name: Humana Press, Totowa, NJ
Print ISBN: 978-1-60761-958-1
Online ISBN: 978-1-60761-959-8
eBook Packages: Biomedical and Life SciencesBiomedical and Life Sciences (R0)