Abstract
This paper addresses the impact of genetic advances and understandings on our concept of the self and the individual. In particular it focuses on conceptions of the ‘autonomous individual’ in the post-Enlightenment tradition and in bioethics. It considers the ascendancy of the autonomous individual as the model of the self and describes the erosion of substantial concepts of the self and the reduction of the self to “the will”—with the accompanying values of freedom, choice and autonomy. This conception of the self as an isolated, autonomous individual, characterised by acts of ‘will’ is then critiqued drawing on both theoretical sources, particularly the work of Iris Murdoch, and practical sources, namely the difficulties raised by genetics.
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Notes
Murdoch uses ‘structuralism’ or ‘Derrida’s structuralism’ somewhat confusingly to notate what would usually be termed ‘deconstruction.’ Given the prevalence of this term in her work the text follows her (albeit unusual) terminology.
In this vein she argues that ‘the younger Sartre, and many British moral philosophers, represent this last dry distilment of Kant’s views of the world. The study of motivation is surrendered to empirical science: will takes the place of the complex of motives and also of the complex of virtues’ [17, p. 48].
Again I would like to emphasise neither Murdoch or I are denying the importance of the individual nor asserting an anti-individualist theory, but rather wishing to assert a more complex picture of the self, which in fact will affirm the individual as it will provide richer resources for understanding and one’s place in the world and from which moral action and behaviour can arise. Indeed Murdoch’s moral philosophy is premised on the reality of the individual self, so much so that she states that ‘the central concept of morality is “the individual”‘ [17, p. 30]—thus what is at issue is not the existence of the individual self—but how that self is construed.
The joint account model regards genetic information as belonging to, and available to, all family members. While there may be cases where information could be withheld (for example in situations where such disclosure would seriously harm the individual) the ‘default’ position would be that genetic information is familial and not individual. The ‘family covenant’ regards the family and not the individual as the ‘unit of care’ and is an advanced agreement about how results from genetic tests are to be disclosed. This model has been praised as being ‘a significant step by recognising that in genetics the family plays a significant role in genetic counselling and testing, and the family, not simply the individual is the patient’ [15, p. 31]. Thus, the convent model focuses on a group and ‘claims to move beyond a strictly autonomy-driven paradigm’ [14, p. 33]. However, while going some way to redressing the problems of the individual bias of confidentiality and informed consent the family covenant model continues to have problems. For example, questions about who should be included as a family member may cause difficulty and, as has been pointed out, if questions about how and when to disclose are likely to become problematic the family covenant will not be adequate as it cannot be enforced. Moreover, the family covenant does not, in fact, question the underlying individual premises, and consent and confidentiality remain important. For, even in this model, confidentiality remains a key concept and is ‘promoted within the boundaries agreed to by all parties’ [9, p. 7]. Moreover, the authors of the model assert that ‘when the family covenant is used in genetic testing, healthcare would continue to be directed toward the individual patient. The covenant applies only to the extent that the physician (and the patient) must consider the impact of genetic test results on other family members to the extent agreed upon a priori by the family’ [9, p. 7]. Thus the individual bias remains and individual autonomy is regarded as a foundational premise and seemingly untouchable. Therefore, while attempting to incorporate a wider ethical locus, and to take into account the shared nature of genetic material, the family covenant does not actually move very far from the usual individual models. In particular it continues to uphold individual consent and confidentiality as primary ethical premises and by implication the value of autonomy of the individual remains paramount.
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Widdows, H. Conceptualising the Self in the Genetic Era. Health Care Anal 15, 5–12 (2007). https://doi.org/10.1007/s10728-006-0033-5
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DOI: https://doi.org/10.1007/s10728-006-0033-5