Abstract
Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly complex and socially differentiated healthcare systems a number of social groups, each committed to a common cause, are involved in medical decisions and sometimes even try to influence bioethical discourses according to their own agenda. We argue that the significance of these collective actors is unjustifiably neglected in bioethics. The growing influence of collective actors in the fields of biopolitics and bioethics leads us to pursue the question as to how collective moral claims can be characterized and justified. We pay particular attention to elaborating the circumstances under which collective actors can claim ‘collective agency.’ Specifically, we develop four normative-practical criteria for collective agency in order to determine the conditions that must be given to reasonably speak of ‘collective autonomy’. For this purpose, we analyze patient organizations and families, which represent two quite different kinds of groups and can both be conceived as collective actors of high relevance for bioethical practice. Finally, we discuss some practical implications and explain why the existence of a shared practice of trust is of immediate normative relevance in this respect.
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References
Appiah, K.A. 2005. The ethics of identity. Woodstock: Princeton.
Baier, A. 1986. Trust and anti-trust. Ethics 96: 231–260.
Beier, K. 2015. Surrogate Motherhood–a trust-based approach. Journal of Medicine & Philosophy 40(6): 631–652.
Baker, M., and P. Watson. 2011. Patients’ organizations and their opinions: How much have they been taken into consideration when regulating stem cell research? In Translational stem cell research: issues beyond the debate on the moral status of the human embryo, ed. K. Hug, and G. Hermerén, 365–373. New York: Humana Press.
Boddington, P. 1998. Organ donation after death—Should i decide, or should my family? Journal of Applied Philosophy 15(1): 69–81.
Bratman, M.E. 2006. Shared cooperative action. Philosophical Review 101(2): 327–341.
Bromley, R.L. 2014. Financial stability in biobanking: unique challenges for disease-focused foundations and patient advocacy organizations. Biopreservation and Biobanking 12(5): 294–299.
Brown, P., et al. 2011. Contested illnesses. Citizens, science, and health social movements. Berkeley: University of California Press.
Brown, P., and S. Zavestoski. 2004. Social movements in health: An introduction. Sociology of Health and Illness 26(6): 679–694.
Buchholz, E.H. 2010. Der (selbst-)geschützte Patient. Eine gesundheitswissenschaftliche Studie. Nomos: Baden-Baden.
Cooper, D.E. 1991. Collective responsibility. In The spectrum of responsibility, ed. P.A. French, 255–264. New York: St. Martins Press.
Crouch, R.A., and C. Elliot. 1999. Moral agency and the family: The case of living related organ transplantation. Cambridge Quarterly of Healthcare Ethics 8: 275–287.
Engelhardt, H.D. 2011. Leitbild Menschenwürde. Wie Selbsthilfeinitiativen den Gesundheits- und Sozialbereich demokratisieren. Frankfurt am Main: Campus.
Epstein, S. 1996. Impure science; AIDS, activism, and the politics of knowledge. Berkeley: University of California Press.
Feinberg, J. 1986. Harm to self. The moral limits of the criminal law. Oxford: Oxford University Press.
Fineman, M.A. 1999. What place for family privacy. George Washington Law Review 67(5–6): 1207–1224.
Fox, P.J., and R.L. Beard. 2008. Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss. Social Science and Medicine 66: 1509–1520.
French, P.A., and H.K. Wettstein. 2006. Shared intentions and collective responsibility. Midwest studies. Boston: Wiley.
Gilbar, R., and O. Gilbar. 2009. The medical decision-making process and the family: The case of breast cancer patients and their husbands. Bioethics 23(3): 183–192.
Gilbert, M. 1990. Walking together. Midwest Studies Philosophy 15: 1–14.
Gilbert, M. 1992. On social facts. Princeton: Princeton University Press.
Hardwig, J. 1990. What about the family. The Hastings Center Report 20(2): 5–10.
Hartmann, M. 2011. Die Praxis des Vertrauens. Frankfurt am Main: Suhrkamp.
Hauser-Schäublin, B., et al. 2008. Der geteilte Leib: Die kulturelle Dimension von Organtransplantation und Reproduktionsmedizin in Deutschland. Göttingen: Campus.
High, D.M. 1988. All in the family: Extended autonomy and expectations in surrogate health-care decision-making. The Gerontologist 28: 46–50.
Ho, A. 2008. Relational autonomy or undue pressure? Family`s role in medical decision-making. Scandinavian Journal of Caring Science 22: 128–135.
Jeske, D. 1998. Families, friends and special obligations. Canadian Journal of Philosophy 28(4): 527–556.
Kymlicka, W. 1994. Individual and community rights. In Group rights, ed. J. Baker, 17–33. Toronto: University of Toronto Press.
Kymlicka, W. 1996. Multicultural citizenship: A liberal theory of minority rights. Oxford: Clarendon Press.
Lahno, B. 2001. On the emotional character of trust. Ethical Theory and Moral Practice 4: 171–189.
Langstrup, H., and J. Sommerlund. 2008. Who has more life? Authentic bodies and the ethopolitics of stem cells. Configurations 16(3): 379–398.
Lindemann Nelson, H., and J. Lindemann Nelson. 1995. The patient in the family. An ethics of medicine and families. New York: Routledge.
Matzat, J. 2001–2002. The development of self-help groups and support for them in germany. Self Help and Self Care 1(4): 307–322.
MacKinnon, C. 1987. Feminism Unmodified: Discourses on Life and Law. Cambridge MS: Harvard University Press.
Macklin, R. 1991. Artificial means of reproduction and our understanding of the family. Hastings Center Report 21(1): 5–11.
Minow, M.L. 1991. Redefining families: Who’s in & who’s out? University of Colorado Law Review 62(2): 269–285.
Moller Okin, S. 1989. Justice, gender, and the family. New York: Basic Books.
Montgomery, R.J. 1999. The family role in the context of long-term care. Aging Health. 11(3): 383–416.
Morgen, S. 2002. Into our own hands: The women’s health movement in the United States, 1969–1990. New Brunswick: Rutgers University Press.
Murray, T. 2002. What are families for? Getting to an ethics of reproductive technology. Hastings Center Report 32(3): 41–45.
Panofsky, A. 2010. Generating sociability to drive science: Patient advocacy organizations and genetic research. Social Studies of Science 41(1): 31–57.
Pellegrino, E.D. 1990. The medical profession as a moral community. Bulletin of the New York Academy of Medicine 66(3): 221–232.
Pettit, P. 2003. Groups with minds of their own. In Socializing metaphysics—The nature of social reality, ed. F. Schmitt, 167–193. New York: Rowman & Littlefield.
Pettit, P., and D.P. Schweikard. 2006. Joint actions and group agents. Philosophy of the Social Sciences 36(1): 18–39.
Rabeharisoa, V., and M. Callon. 2000. Les associations de malades et la recherche: 1. Des self-help groups aux associations de malades. Médecine Sciences 16(8–9): 945–949.
Rabeharisoa, V., and M. Callon. 2002. The involvement of patients’ associations in research. International Social Science Journal 54(171): 57–63.
Rabeharisoa, V., and M. Callon. 2003. Research “in the Wild” and the shaping of new social identities. Technology in Society 25: 193–204.
Ruzek, S.B., et al. 1997. Women’s health: Complexities and differences. Columbus: Ohio State University Press.
Scheffler, S. 1997. Relationships and responsibilities. Philosophy and Public Affairs 26: 189–209.
Schicktanz, S. 2015. The ethical legitimacy of patient organizations’ involvement in politics and knowledge production: Epistemic justice as a conceptual basis. In The Public Shaping of Medical Research: Patient Associations, Health Movements and Biomedicine (Routledge Studies in the Sociology of Health and Illness), ed. P. Wehling and W. Viehöver, 246–264. London: Routledge.
Schicktanz, S. and Jordan, I. 2013. Kollektive Patientenautonomie. Theorie und Praxis eines neuen bioethischen Konzepts. In Patientenautonomie. Theoretische Grundlagen – Praktische Anwendungen, ed. C. Wiesemann and A. Simon, 287–302. Münster: Mentis.
Schicktanz, S. et al. 2012. The ethics of public understanding of ethics—why and how bioethics expertise should include public and patients voices. Medicine, Health Care, and Philosophy 15(2): 129–139.
Schicktanz, S. et al. 2008. In a completely different light? The role of being affected for the epistemic perspectives and moral attitudes of patients, relatives and lay people. Medicine, Health Care, and Philosophy 11(1): 57–72.
Seymour Fahmy, M. 2013. On procreative responsibility in assisted and collaborative reproduction. Ethical Theory and Moral Practice 16: 55–70.
Smith, P. 2010. Family responsibility and the nature of obligation. In The ethics of the family, ed. S. Scales, et al., 41–58. Cambridge: Cambridge Scholars Publishing.
Schmid, H.B. and Schweikard, D.P. 2009. Einleitung: Kollektive Intentionalität. Begriff, Geschichte, Probleme. In: Kollektive Intentionalität. Eine Debatte über die Grundlagen des Sozialen, ed. H.B. Schmid and D.P. Schweikard, 11–65. Frankfurt am Main: Suhrkamp.
Schweikard, D.P. 2013. Kollektive Autonomie und Autonomie in Kollektiven. In Patientenautonomie. Theoretische Grundlagen – Praktische Anwendungen, ed. C. Wiesemann, and A. Simon, 303–315. Münster: Mentis.
Sommers, C.H. 1989. Philosophers against the family. In Person to person, ed. H. La Follette, and G. Graham, 82–105. Philadelphia: Temple University Press.
Stoutland, F. 1997. Why are philosophers of action so anti-social? In Commonality and particularity in ethics, ed. L. Alanen, et al., 45–74. Basingstoke: Macmillan.
Tuomela, R. 2003. Collective acceptance, social institutions, and group beliefs. In Kaltblütig. Philosophie von einem rationalen Standpunkt. Festschrift für Gerhard Vollmer zum 60. geburtstag, ed. W. Buschlinger, and C. Lüdge, 429–446. Stuttgart: Hirzel.
Verkerk, M.A. et al. 2014. Where families and healthcare meet. Journal of Medical Ethics.
Wehling, P. 2011. The “Technoscientization” of medicine and its limits. Technoscientific identities, biosocialities, and rare disease patient organizations. Poiesis & Praxis. International Journal of Technology Assessment and Ethics of Science 8: 67–82.
Wehling, P., et al. 2015. The public shaping of medical research. Patient associations, health movements and biomedicine. New York and London: Routledge.
WHO (The World Health Organization) 1994. A declaration on the promotion of patients’ rights in Europe. European consultation on the rights of patients. Amsterdam 20–28 March 1994.
Wiesemann, C. 2006. Von der Verantwortung ein Kind zu bekommen. Eine Ethik der Elternschaft. München: C.H. Beck.
Wiesemann, C. 2010. The moral challenge of natality: Towards a post-traditional concept of family and privacy in repro-genetics. New Genetics and Society 29: 61–71.
Wiesemann, C. 2016. Moral Equality, Bioethics, and the Child. Dordrecht: Springer.
Wiesemann, C., and N. Biller-Andorno. 2003. Ethik der Transplantationsmedizin. In Bioethik. Eine Einführung, ed. M. Düwell, and K. Steigleder, 284–290. Frankfurt am Main: Suhrkamp.
Williams, M.S. 1998. Voice, trust and memory. Marginalized groups and the failings of liberal representation. Princeton: Princeton University Press.
Woodhouse, B.B. 1999. The dark side of family privacy. George Washington Law Review 67: 1247–1262.
Young, I.M. 1997. Intersecting voices. Dilemmas of gender, political philosophy, and policy. Princeton: Princeton University Press.
Acknowledgments
This paper results from the project “Autonomy and Trust in Modern Medicine,” which was funded by the Volkswagen-Foundation (2010–2014). We would like to thank Stephan Elkins (SocioTrans–Social Science Translation & Editing) for his translation work and language editing.
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Katharina Beier and Isabella Jordan have equally contributed to this work.
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Beier, K., Jordan, I., Wiesemann, C. et al. Understanding collective agency in bioethics. Med Health Care and Philos 19, 411–422 (2016). https://doi.org/10.1007/s11019-016-9695-4
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DOI: https://doi.org/10.1007/s11019-016-9695-4