Skip to main content
Log in

Understanding collective agency in bioethics

  • Scientific Contribution
  • Published:
Medicine, Health Care and Philosophy Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

Notes

  1. For a critical discussion of this view, Wiesemann and Biller-Andorno (2003).

  2. “Groups with minds of their own” are the result of this deliberative process (Pettit 2003).

References

  • Appiah, K.A. 2005. The ethics of identity. Woodstock: Princeton.

    Google Scholar 

  • Baier, A. 1986. Trust and anti-trust. Ethics 96: 231–260.

    Article  Google Scholar 

  • 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.

    Chapter  Google Scholar 

  • Boddington, P. 1998. Organ donation after death—Should i decide, or should my family? Journal of Applied Philosophy 15(1): 69–81.

    Article  Google Scholar 

  • Bratman, M.E. 2006. Shared cooperative action. Philosophical Review 101(2): 327–341.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Brown, P., et al. 2011. Contested illnesses. Citizens, science, and health social movements. Berkeley: University of California Press.

    Google Scholar 

  • Brown, P., and S. Zavestoski. 2004. Social movements in health: An introduction. Sociology of Health and Illness 26(6): 679–694.

    Article  Google Scholar 

  • Buchholz, E.H. 2010. Der (selbst-)geschützte Patient. Eine gesundheitswissenschaftliche Studie. Nomos: Baden-Baden.

    Google Scholar 

  • Cooper, D.E. 1991. Collective responsibility. In The spectrum of responsibility, ed. P.A. French, 255–264. New York: St. Martins Press.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • Engelhardt, H.D. 2011. Leitbild Menschenwürde. Wie Selbsthilfeinitiativen den Gesundheits- und Sozialbereich demokratisieren. Frankfurt am Main: Campus.

    Google Scholar 

  • Epstein, S. 1996. Impure science; AIDS, activism, and the politics of knowledge. Berkeley: University of California Press.

    Google Scholar 

  • Feinberg, J. 1986. Harm to self. The moral limits of the criminal law. Oxford: Oxford University Press.

    Google Scholar 

  • Fineman, M.A. 1999. What place for family privacy. George Washington Law Review 67(5–6): 1207–1224.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • French, P.A., and H.K. Wettstein. 2006. Shared intentions and collective responsibility. Midwest studies. Boston: Wiley.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • Gilbert, M. 1990. Walking together. Midwest Studies Philosophy 15: 1–14.

    Article  Google Scholar 

  • Gilbert, M. 1992. On social facts. Princeton: Princeton University Press.

    Google Scholar 

  • Hardwig, J. 1990. What about the family. The Hastings Center Report 20(2): 5–10.

    Article  Google Scholar 

  • Hartmann, M. 2011. Die Praxis des Vertrauens. Frankfurt am Main: Suhrkamp.

    Google Scholar 

  • Hauser-Schäublin, B., et al. 2008. Der geteilte Leib: Die kulturelle Dimension von Organtransplantation und Reproduktionsmedizin in Deutschland. Göttingen: Campus.

    Google Scholar 

  • High, D.M. 1988. All in the family: Extended autonomy and expectations in surrogate health-care decision-making. The Gerontologist 28: 46–50.

    Article  Google Scholar 

  • Ho, A. 2008. Relational autonomy or undue pressure? Family`s role in medical decision-making. Scandinavian Journal of Caring Science 22: 128–135.

    Article  Google Scholar 

  • Jeske, D. 1998. Families, friends and special obligations. Canadian Journal of Philosophy 28(4): 527–556.

    Article  Google Scholar 

  • Kymlicka, W. 1994. Individual and community rights. In Group rights, ed. J. Baker, 17–33. Toronto: University of Toronto Press.

    Google Scholar 

  • Kymlicka, W. 1996. Multicultural citizenship: A liberal theory of minority rights. Oxford: Clarendon Press.

    Book  Google Scholar 

  • Lahno, B. 2001. On the emotional character of trust. Ethical Theory and Moral Practice 4: 171–189.

    Article  Google Scholar 

  • Langstrup, H., and J. Sommerlund. 2008. Who has more life? Authentic bodies and the ethopolitics of stem cells. Configurations 16(3): 379–398.

    Article  Google Scholar 

  • Lindemann Nelson, H., and J. Lindemann Nelson. 1995. The patient in the family. An ethics of medicine and families. New York: Routledge.

    Google Scholar 

  • 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.

    Google Scholar 

  • Macklin, R. 1991. Artificial means of reproduction and our understanding of the family. Hastings Center Report 21(1): 5–11.

    Article  Google Scholar 

  • Minow, M.L. 1991. Redefining families: Who’s in & who’s out? University of Colorado Law Review 62(2): 269–285.

    Google Scholar 

  • Moller Okin, S. 1989. Justice, gender, and the family. New York: Basic Books.

    Google Scholar 

  • Montgomery, R.J. 1999. The family role in the context of long-term care. Aging Health. 11(3): 383–416.

    Article  Google Scholar 

  • Morgen, S. 2002. Into our own hands: The women’s health movement in the United States, 1969–1990. New Brunswick: Rutgers University Press.

    Google Scholar 

  • Murray, T. 2002. What are families for? Getting to an ethics of reproductive technology. Hastings Center Report 32(3): 41–45.

    Article  Google Scholar 

  • Panofsky, A. 2010. Generating sociability to drive science: Patient advocacy organizations and genetic research. Social Studies of Science 41(1): 31–57.

    Article  Google Scholar 

  • Pellegrino, E.D. 1990. The medical profession as a moral community. Bulletin of the New York Academy of Medicine 66(3): 221–232.

    Google Scholar 

  • 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.

    Google Scholar 

  • Pettit, P., and D.P. Schweikard. 2006. Joint actions and group agents. Philosophy of the Social Sciences 36(1): 18–39.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Rabeharisoa, V., and M. Callon. 2002. The involvement of patients’ associations in research. International Social Science Journal 54(171): 57–63.

    Article  Google Scholar 

  • Rabeharisoa, V., and M. Callon. 2003. Research “in the Wild” and the shaping of new social identities. Technology in Society 25: 193–204.

    Article  Google Scholar 

  • Ruzek, S.B., et al. 1997. Women’s health: Complexities and differences. Columbus: Ohio State University Press.

    Google Scholar 

  • Scheffler, S. 1997. Relationships and responsibilities. Philosophy and Public Affairs 26: 189–209.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Chapter  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Google Scholar 

  • Wehling, P., et al. 2015. The public shaping of medical research. Patient associations, health movements and biomedicine. New York and London: Routledge.

    Google Scholar 

  • WHO (The World Health Organization) 1994. A declaration on the promotion of patients’ rights in Europe. European consultation on the rights of patients. Amsterdam 2028 March 1994.

  • Wiesemann, C. 2006. Von der Verantwortung ein Kind zu bekommen. Eine Ethik der Elternschaft. München: C.H. Beck.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • Williams, M.S. 1998. Voice, trust and memory. Marginalized groups and the failings of liberal representation. Princeton: Princeton University Press.

    Google Scholar 

  • Woodhouse, B.B. 1999. The dark side of family privacy. George Washington Law Review 67: 1247–1262.

    Google Scholar 

  • Young, I.M. 1997. Intersecting voices. Dilemmas of gender, political philosophy, and policy. Princeton: Princeton University Press.

    Google Scholar 

Download references

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.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Silke Schicktanz.

Additional information

Katharina Beier and Isabella Jordan have equally contributed to this work.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11019-016-9695-4

Keywords

Navigation