chapter  4
16 Pages

ETHICS AS PASTORAL PRACTICE: IMPLEMENTING PREDICTIVE GENETIC TESTING IN THE MEDICAL GENETICS CLINIC

WithCarlos Novas

Over the course of the last three decades, the experience of illness and health has been transformed with the introduction of new technologies into the practice of medicine. These technological developments transform our conceptions of normality and pathology, the ways we think and act in relation to our bodies and selves, the ways we deliver our sufferings to the secular hopes and promises of science. Accompanying this movement is the widespread belief that the authority and conduct of the physician has to be organised along an ethic that promotes the autonomy of the subject, supports the choices they make in deciding the course of their health and illness, obtains their voluntary and informed consent to submit to a programme of medical intervention, and seeks to avoid harm to all those who enter into relations of medical care. While these values and principles carry significant weight, they should not be taken at face value, as the realities of the negotiation and resolution of ethical dilemmas in medicine take place in a plural and contested field. Furthermore, the translation of these principles into medical practice involves a technical labour that blends together heterogeneous forms of knowing, modes of perception, types of judgment, practices of calculation, specialist vocabularies, conceptions of persons, ways of speaking and acting, the mobilisation of skills, capacities and dispositions. This technical labour works upon and shapes the conduct of medical practitioners and the subjects who fall under their authority to achieve certain outcomes that are considered desirable and to avoid untoward events. This labour can comprise efforts to provide the best quality of medical care in relation to new developments in medical science, attempts to improve the capacities of individuals to enhance the quality of their lives in the realisation of a programme of medical care, programmes that enable individuals to take responsibility for their health or illness in alliance with the medical profession, and efforts to minimise the instances in which individuals may bring harm to themselves, such as those provoking severe depression or

suicide, as is thought possible when individuals decide to learn their biological fate for late onset genetic diseases.