Where ethical or regulatory questions arise about an individual’s interests in accessing bioinformation about herself, the value of this information has traditionally been construed in terms of its clinical utility. It is increasingly argued, however, that the “personal utility” of findings should also be taken into account. This article characterizes one particular aspect of personal utility: that derived from the role of personal bioinformation in identity construction. The suggestion that some kinds of information are relevant to identity is not in (...) itself new. However, the account outlined here seeks to advance the debate by proposing a conception of the relationship between bioinformation and identity that does not depend on essentialist assumptions and applies beyond the narrow genetic contexts in which identity is customarily invoked. The proposal is that the identity-value of personal bioinformation may be understood in terms of its instrumental role in the construction of our narrative identities, specifically that its value lies in helping us to develop self-narratives that support us in navigating our embodied existences. I argue that this narrative conception provides useful insights that are pertinent to the ethical governance of personal bioinformation. It illuminates a wider range of ethical considerations in relation to information access; it accounts for variations in the utility of different kinds of information; and it highlights that the context in which information is conveyed can be as important as whether it is disclosed at all. These arguments are illustrated using an example drawn from psychiatric neuroimaging research. (shrink)

The embodied human subject is dynamically connected to his or her historico-sociocultural context, the soil from which a person’s psyche is nourished as multiplex meanings are absorbed and enable personal development. In each culture certain towering artistic works embody this perspective. The Dream of the Red Chamber introduces Jia Bao-yu—a scion of the prestigious Jia family—and his relationships with a large cast of characters. Bao-yu is controversial but, at the time of the family’s tragic collapse, he can be seen as (...) embodying a spiritual struggle in which his instinct, nature, sensitivity, and creativity are grounded in his transcendent relationship with a fragment of the world stone, an eternal source of energy and creativity. We are invited to draw on a metaphysical level of thought to consider his struggles with man-made hierarchies and a situated historico-sociocultural order in such a way as to live out his spiritual being. As such, the novel is closely relevant to questions of spirituality in bioethics. Through personal experiences, passions, creativity, and relationships with others, the body is inscribed, forming the soul, which may be misconstrued (for instance, through a medical or Cartesian reformulation of events) but which can be seen as the site of ethical and spiritual thought. (shrink)

The human brain is subjective and reflects the life of a being-in-the-world-with-others whose identity reflects that complex engaged reality. Human subjectivity is shaped and in-formed (formed by inner processes) that are adapted to the human life-world and embody meaning and the relatedness of a human being. Questions of identity relate to this complex and dynamic reality to reflect the fact that biology, human ecology, culture, and one's historic-political situation are inscribed in one's neural network and have configured its architecture so (...) that it is a unique and irreplaceable phenomenon. So much is a human individual a relational being whose own understanding and ownership of his or her life is both situated and distinctive that neurophilosophical conceptions of identity and human activity that neglect these features of our being are quite inadequate to ground a robust neuroethics. (shrink)

Walter Freeman, the self styled neurosurgeon, became famous (or infamous) for psychosurgery. The operation of frontal leucotomy swept through the world (with Freeman himself performing something like 18,000 cases) but it has tainted the whole idea of psychosurgery down to the present era. Modes of psychosurgery such as Deep Brain Stimulation and other highly selective neurosurgical procedures for neurological and psychiatric conditions are in ever-increasing use in current practice. The new, more exciting techniques are based in a widely held philosophical (...) position on the relationship between the mind, brain and soul, which is the key to ethical debates in this area. Psychosurgery has always posed questions of responsibility, personality, character, identity, spirit, relationship, integrity, and human flourishing and they do not go away when we enter the brave new world of neuroethics and Deep Brain Stimulation. (shrink)

Truth and knowledge are conceptually related and there is a way of construing both that implies that they cannot be solely derived from a description that restricts itself to a set of scientific facts. In the first section of this essay, I analyse truth as a relation between a praxis, ways of knowing, and the world. In the second section, I invoke the third thing—the objective reality on which we triangulate as knowing subjects for the purpose of complex scientific endeavours (...) like medical science and clinical care. Such praxes develop robust methods of “keeping in touch” with disease and illness. An analysis drawing on philosophical semantics motivates the needed account of meaning and truth and underpins the following argument: the formulation and dissemination of knowledge rests on language; language is selective in what it represents in any given situation; the praxes of a given culture are based on this selectivity; but human health and illness involve whole human beings in a human life-world; therefore, medical knowledge should reflectively transcend, where required, biomedical science towards a more inclusive view. Parts three and four argue that a post-structuralist account of the human subject can avoid both scientism and idealism or unconstrained relativism. (shrink)