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Why Non-Directiveness is Insufficient: Ethics of Genetic Decision Making and a Model of Agency

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Medicine Studies

Abstract

There is no consensus about the ethical ideal of genetic counselling and decision making. This paper reviews and discusses some of the most prominent ethical arguments that have been brought forward against the non-directiveness principle (NDP), which has been the ethical gold standard for a long time. These arguments can be classed in four categories: (i) NDP can be against the best interests of the individuals concerned; (ii) NDP has ideological elements that do not adequately represent the counselling ethos; (iii) NDP was historically a defensive tool that protected the interests of geneticists against social criticism and against litigation; (iv) NDP falsely assumes individual responsibility and hides the shared responsibility of other social actors. The paper argues that a serious understanding of moral space, which people need in order to make ‘their own’ decisions, leads to a necessarily relational concept of agency. The positive counterpart of NDP is to allow a space for agency. Allowing agency implies offering the kind of support that the decision-making person really needs. To make a good decision about personal genetics implies being empowered to act as a contextually sensitive person who is aware of relationships and corresponding responsibilities.

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Notes

  1. I use the terms ‘genetic dialogue’ and ‘genetic communication’ interchangeably.

  2. The explication of the ‘virtues’ as human excellences is owed to Nussbaum (1990, p. 79), and Aristotle (2009), NE, 1106b 21–23.

  3. The empowerment perspective has been introduced to the autonomy discussion from a psychological perspective by McConkie-Rosell et al. (1999).

  4. Here I use the phrase “dependency-in-fact” that has been introduced by Walker (1998b, p. 84), in her discussion of Robert Goodin’s well-known principle of vulnerability. The notion of vulnerability is explained as follows: “X is vulnerable to Y in respect to N when X is actually depending on or circumstantially upon Y to secure or protect N because of the nature of their existing relationship, some prior agreement between them or by them, a particular causal history between them, or the fact of Y’s unique proximity and capability in light of X’s extreme plight” (ibid.).

  5. I am grateful to one of the anonymous reviewers for suggesting this point.

  6. Lippman (1999, p. 272) has used this formulation with regard to religious or cultural reasons that can in some instances counter the weight of professional advice and “allow women agency”.

Abbreviations

NDP:

Non-directiveness principle

PGD:

Pre-implantation genetic diagnosis

PND:

Prenatal diagnosis

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Acknowledgments

I thank Jackie Leach Scully and Rouven Porz for inspiring discussions during years of research collaboration, The Swiss Academy of Medical Sciences for financial support for a related book project on Disclosure Dilemmas (in which an earlier version of my argument has appeared: Rehmann-Sutter 2009), Hansjakob Müller for co-editing this book with me and for showing me again and again that disclosure in genetic counselling is a fascinating ethical topic, Anika Mitzkat for helpful feedback to a first draft, Rowena Smith for English revision and Ilhan Ilkilic for the invitation to submit a paper to this Journal.

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Rehmann-Sutter, C. Why Non-Directiveness is Insufficient: Ethics of Genetic Decision Making and a Model of Agency. Medicine Studies 1, 113–129 (2009). https://doi.org/10.1007/s12376-009-0023-7

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