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Published in: Medicine, Health Care and Philosophy 3/2016

01-09-2016 | Scientific Contribution

Understanding collective agency in bioethics

Authors: Katharina Beier, Isabella Jordan, Claudia Wiesemann, Silke Schicktanz

Published in: Medicine, Health Care and Philosophy | Issue 3/2016

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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.
Footnotes
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).
 
Literature
go back to reference Appiah, K.A. 2005. The ethics of identity. Woodstock: Princeton. Appiah, K.A. 2005. The ethics of identity. Woodstock: Princeton.
go back to reference Beier, K. 2015. Surrogate Motherhood–a trust-based approach. Journal of Medicine & Philosophy 40(6): 631–652. Beier, K. 2015. Surrogate Motherhood–a trust-based approach. Journal of Medicine & Philosophy 40(6): 631–652.
go back to reference 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.CrossRef 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.CrossRef
go back to reference Boddington, P. 1998. Organ donation after death—Should i decide, or should my family? Journal of Applied Philosophy 15(1): 69–81.CrossRef Boddington, P. 1998. Organ donation after death—Should i decide, or should my family? Journal of Applied Philosophy 15(1): 69–81.CrossRef
go back to reference Bratman, M.E. 2006. Shared cooperative action. Philosophical Review 101(2): 327–341.CrossRef Bratman, M.E. 2006. Shared cooperative action. Philosophical Review 101(2): 327–341.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference Brown, P., et al. 2011. Contested illnesses. Citizens, science, and health social movements. Berkeley: University of California Press. Brown, P., et al. 2011. Contested illnesses. Citizens, science, and health social movements. Berkeley: University of California Press.
go back to reference Brown, P., and S. Zavestoski. 2004. Social movements in health: An introduction. Sociology of Health and Illness 26(6): 679–694.CrossRef Brown, P., and S. Zavestoski. 2004. Social movements in health: An introduction. Sociology of Health and Illness 26(6): 679–694.CrossRef
go back to reference Buchholz, E.H. 2010. Der (selbst-)geschützte Patient. Eine gesundheitswissenschaftliche Studie. Nomos: Baden-Baden. Buchholz, E.H. 2010. Der (selbst-)geschützte Patient. Eine gesundheitswissenschaftliche Studie. Nomos: Baden-Baden.
go back to reference Cooper, D.E. 1991. Collective responsibility. In The spectrum of responsibility, ed. P.A. French, 255–264. New York: St. Martins Press. Cooper, D.E. 1991. Collective responsibility. In The spectrum of responsibility, ed. P.A. French, 255–264. New York: St. Martins Press.
go back to reference 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.CrossRef 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.CrossRef
go back to reference Engelhardt, H.D. 2011. Leitbild Menschenwürde. Wie Selbsthilfeinitiativen den Gesundheits- und Sozialbereich demokratisieren. Frankfurt am Main: Campus. Engelhardt, H.D. 2011. Leitbild Menschenwürde. Wie Selbsthilfeinitiativen den Gesundheits- und Sozialbereich demokratisieren. Frankfurt am Main: Campus.
go back to reference Epstein, S. 1996. Impure science; AIDS, activism, and the politics of knowledge. Berkeley: University of California Press. Epstein, S. 1996. Impure science; AIDS, activism, and the politics of knowledge. Berkeley: University of California Press.
go back to reference Feinberg, J. 1986. Harm to self. The moral limits of the criminal law. Oxford: Oxford University Press. Feinberg, J. 1986. Harm to self. The moral limits of the criminal law. Oxford: Oxford University Press.
go back to reference Fineman, M.A. 1999. What place for family privacy. George Washington Law Review 67(5–6): 1207–1224. Fineman, M.A. 1999. What place for family privacy. George Washington Law Review 67(5–6): 1207–1224.
go back to reference 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.CrossRef 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.CrossRef
go back to reference French, P.A., and H.K. Wettstein. 2006. Shared intentions and collective responsibility. Midwest studies. Boston: Wiley. French, P.A., and H.K. Wettstein. 2006. Shared intentions and collective responsibility. Midwest studies. Boston: Wiley.
go back to reference 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.CrossRef 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.CrossRef
go back to reference Gilbert, M. 1992. On social facts. Princeton: Princeton University Press. Gilbert, M. 1992. On social facts. Princeton: Princeton University Press.
go back to reference Hardwig, J. 1990. What about the family. The Hastings Center Report 20(2): 5–10.CrossRef Hardwig, J. 1990. What about the family. The Hastings Center Report 20(2): 5–10.CrossRef
go back to reference Hartmann, M. 2011. Die Praxis des Vertrauens. Frankfurt am Main: Suhrkamp. Hartmann, M. 2011. Die Praxis des Vertrauens. Frankfurt am Main: Suhrkamp.
go back to reference Hauser-Schäublin, B., et al. 2008. Der geteilte Leib: Die kulturelle Dimension von Organtransplantation und Reproduktionsmedizin in Deutschland. Göttingen: Campus. Hauser-Schäublin, B., et al. 2008. Der geteilte Leib: Die kulturelle Dimension von Organtransplantation und Reproduktionsmedizin in Deutschland. Göttingen: Campus.
go back to reference High, D.M. 1988. All in the family: Extended autonomy and expectations in surrogate health-care decision-making. The Gerontologist 28: 46–50.CrossRef High, D.M. 1988. All in the family: Extended autonomy and expectations in surrogate health-care decision-making. The Gerontologist 28: 46–50.CrossRef
go back to reference Ho, A. 2008. Relational autonomy or undue pressure? Family`s role in medical decision-making. Scandinavian Journal of Caring Science 22: 128–135.CrossRef Ho, A. 2008. Relational autonomy or undue pressure? Family`s role in medical decision-making. Scandinavian Journal of Caring Science 22: 128–135.CrossRef
go back to reference Jeske, D. 1998. Families, friends and special obligations. Canadian Journal of Philosophy 28(4): 527–556.CrossRef Jeske, D. 1998. Families, friends and special obligations. Canadian Journal of Philosophy 28(4): 527–556.CrossRef
go back to reference Kymlicka, W. 1994. Individual and community rights. In Group rights, ed. J. Baker, 17–33. Toronto: University of Toronto Press. Kymlicka, W. 1994. Individual and community rights. In Group rights, ed. J. Baker, 17–33. Toronto: University of Toronto Press.
go back to reference Kymlicka, W. 1996. Multicultural citizenship: A liberal theory of minority rights. Oxford: Clarendon Press.CrossRef Kymlicka, W. 1996. Multicultural citizenship: A liberal theory of minority rights. Oxford: Clarendon Press.CrossRef
go back to reference Lahno, B. 2001. On the emotional character of trust. Ethical Theory and Moral Practice 4: 171–189.CrossRef Lahno, B. 2001. On the emotional character of trust. Ethical Theory and Moral Practice 4: 171–189.CrossRef
go back to reference Langstrup, H., and J. Sommerlund. 2008. Who has more life? Authentic bodies and the ethopolitics of stem cells. Configurations 16(3): 379–398.CrossRef Langstrup, H., and J. Sommerlund. 2008. Who has more life? Authentic bodies and the ethopolitics of stem cells. Configurations 16(3): 379–398.CrossRef
go back to reference Lindemann Nelson, H., and J. Lindemann Nelson. 1995. The patient in the family. An ethics of medicine and families. New York: Routledge. Lindemann Nelson, H., and J. Lindemann Nelson. 1995. The patient in the family. An ethics of medicine and families. New York: Routledge.
go back to reference 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. 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.
go back to reference MacKinnon, C. 1987. Feminism Unmodified: Discourses on Life and Law. Cambridge MS: Harvard University Press. MacKinnon, C. 1987. Feminism Unmodified: Discourses on Life and Law. Cambridge MS: Harvard University Press.
go back to reference Macklin, R. 1991. Artificial means of reproduction and our understanding of the family. Hastings Center Report 21(1): 5–11.CrossRef Macklin, R. 1991. Artificial means of reproduction and our understanding of the family. Hastings Center Report 21(1): 5–11.CrossRef
go back to reference Minow, M.L. 1991. Redefining families: Who’s in & who’s out? University of Colorado Law Review 62(2): 269–285. Minow, M.L. 1991. Redefining families: Who’s in & who’s out? University of Colorado Law Review 62(2): 269–285.
go back to reference Moller Okin, S. 1989. Justice, gender, and the family. New York: Basic Books. Moller Okin, S. 1989. Justice, gender, and the family. New York: Basic Books.
go back to reference Montgomery, R.J. 1999. The family role in the context of long-term care. Aging Health. 11(3): 383–416.CrossRef Montgomery, R.J. 1999. The family role in the context of long-term care. Aging Health. 11(3): 383–416.CrossRef
go back to reference Morgen, S. 2002. Into our own hands: The women’s health movement in the United States, 1969–1990. New Brunswick: Rutgers University Press. Morgen, S. 2002. Into our own hands: The women’s health movement in the United States, 1969–1990. New Brunswick: Rutgers University Press.
go back to reference Murray, T. 2002. What are families for? Getting to an ethics of reproductive technology. Hastings Center Report 32(3): 41–45.CrossRef Murray, T. 2002. What are families for? Getting to an ethics of reproductive technology. Hastings Center Report 32(3): 41–45.CrossRef
go back to reference Panofsky, A. 2010. Generating sociability to drive science: Patient advocacy organizations and genetic research. Social Studies of Science 41(1): 31–57.CrossRef Panofsky, A. 2010. Generating sociability to drive science: Patient advocacy organizations and genetic research. Social Studies of Science 41(1): 31–57.CrossRef
go back to reference Pellegrino, E.D. 1990. The medical profession as a moral community. Bulletin of the New York Academy of Medicine 66(3): 221–232. Pellegrino, E.D. 1990. The medical profession as a moral community. Bulletin of the New York Academy of Medicine 66(3): 221–232.
go back to reference 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. 2003. Groups with minds of their own. In Socializing metaphysics—The nature of social reality, ed. F. Schmitt, 167–193. New York: Rowman & Littlefield.
go back to reference Pettit, P., and D.P. Schweikard. 2006. Joint actions and group agents. Philosophy of the Social Sciences 36(1): 18–39.CrossRef Pettit, P., and D.P. Schweikard. 2006. Joint actions and group agents. Philosophy of the Social Sciences 36(1): 18–39.CrossRef
go back to reference 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.CrossRef 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.CrossRef
go back to reference Rabeharisoa, V., and M. Callon. 2002. The involvement of patients’ associations in research. International Social Science Journal 54(171): 57–63.CrossRef Rabeharisoa, V., and M. Callon. 2002. The involvement of patients’ associations in research. International Social Science Journal 54(171): 57–63.CrossRef
go back to reference Rabeharisoa, V., and M. Callon. 2003. Research “in the Wild” and the shaping of new social identities. Technology in Society 25: 193–204.CrossRef Rabeharisoa, V., and M. Callon. 2003. Research “in the Wild” and the shaping of new social identities. Technology in Society 25: 193–204.CrossRef
go back to reference Ruzek, S.B., et al. 1997. Women’s health: Complexities and differences. Columbus: Ohio State University Press. Ruzek, S.B., et al. 1997. Women’s health: Complexities and differences. Columbus: Ohio State University Press.
go back to reference Scheffler, S. 1997. Relationships and responsibilities. Philosophy and Public Affairs 26: 189–209.CrossRef Scheffler, S. 1997. Relationships and responsibilities. Philosophy and Public Affairs 26: 189–209.CrossRef
go back to reference 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. 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.
go back to reference 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. 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.
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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. 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.
go back to reference Seymour Fahmy, M. 2013. On procreative responsibility in assisted and collaborative reproduction. Ethical Theory and Moral Practice 16: 55–70.CrossRef Seymour Fahmy, M. 2013. On procreative responsibility in assisted and collaborative reproduction. Ethical Theory and Moral Practice 16: 55–70.CrossRef
go back to reference 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. 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.
go back to reference 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. 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.
go back to reference 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. 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.
go back to reference 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. 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.
go back to reference 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.CrossRef 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.CrossRef
go back to reference 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. 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.
go back to reference Verkerk, M.A. et al. 2014. Where families and healthcare meet. Journal of Medical Ethics. Verkerk, M.A. et al. 2014. Where families and healthcare meet. Journal of Medical Ethics.
go back to reference 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. 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.
go back to reference Wehling, P., et al. 2015. The public shaping of medical research. Patient associations, health movements and biomedicine. New York and London: Routledge. Wehling, P., et al. 2015. The public shaping of medical research. Patient associations, health movements and biomedicine. New York and London: Routledge.
go back to reference 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. 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.
go back to reference Wiesemann, C. 2006. Von der Verantwortung ein Kind zu bekommen. Eine Ethik der Elternschaft. München: C.H. Beck. Wiesemann, C. 2006. Von der Verantwortung ein Kind zu bekommen. Eine Ethik der Elternschaft. München: C.H. Beck.
go back to reference 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.CrossRef 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.CrossRef
go back to reference Wiesemann, C. 2016. Moral Equality, Bioethics, and the Child. Dordrecht: Springer. Wiesemann, C. 2016. Moral Equality, Bioethics, and the Child. Dordrecht: Springer.
go back to reference 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. 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.
go back to reference Williams, M.S. 1998. Voice, trust and memory. Marginalized groups and the failings of liberal representation. Princeton: Princeton University Press. Williams, M.S. 1998. Voice, trust and memory. Marginalized groups and the failings of liberal representation. Princeton: Princeton University Press.
go back to reference Woodhouse, B.B. 1999. The dark side of family privacy. George Washington Law Review 67: 1247–1262. Woodhouse, B.B. 1999. The dark side of family privacy. George Washington Law Review 67: 1247–1262.
go back to reference Young, I.M. 1997. Intersecting voices. Dilemmas of gender, political philosophy, and policy. Princeton: Princeton University Press. Young, I.M. 1997. Intersecting voices. Dilemmas of gender, political philosophy, and policy. Princeton: Princeton University Press.
Metadata
Title
Understanding collective agency in bioethics
Authors
Katharina Beier
Isabella Jordan
Claudia Wiesemann
Silke Schicktanz
Publication date
01-09-2016
Publisher
Springer Netherlands
Published in
Medicine, Health Care and Philosophy / Issue 3/2016
Print ISSN: 1386-7423
Electronic ISSN: 1572-8633
DOI
https://doi.org/10.1007/s11019-016-9695-4

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