| dc.description.abstract | This project examines the concept of responsibility in relation to genetics and emerging genetic biotechnologies, with specific reference to preimplantation genetic diagnosis (PGD) and predictive genetic testing. I contend that theories of responsibility operative in bioethics, philosophy, and religious ethics presuppose decision-making contexts and voluntaristic accounts of moral agency. Sparked by insights from the transcripts of religious and medical professional focus groups, I endorse a supplementary account of responsibility bolstered by notions of status and integrity. This account of responsibility, I maintain, reflects how moral agents sometimes speak about responsibility in the clinical context and is more attentive to the challenges posed by emerging genetic technologies.
Drawing on the works of Judith Butler, John Silber, and William Schweiker, I propose an account of responsibility that emphasizes two salient features that are often ignored in scholarly discussions of that concept: 1) Responsibility entails the acceptance of obligations borne from one’s status, regardless of one’s acceptance of the status itself; and 2) while responsibility promotes the movement toward greater integrity in one’s life, that movement paradoxically involves recognizing and incorporating uncertainty and loss of control into that life.
Chapter 1 examines popular discourse on genetics and genetic biotechnologies, with particular reference to the themes of genetic exceptionalism, determinism, and novelty. It also describes what PGD and predictive genetic testing entail. In Chapter 2, I analyze transcripts of focus groups consisting of medical professionals (physicians, nurses, genetic counselors) and religious professionals (evangelical Christian ministers, “mainline” Protestant ministers, hospital chaplains) as well as organizational and denominational statements in order to highlight how responsibility is articulated in relation to genetics-based issues. In Chapter 3, I examine prevalent understandings of responsibility in religious, philosophical, and bioethics literature. In Chapter 4, I turn to Butler, Silber, and Schweiker in order to develop the account of responsibility mentioned above. Finally, in Chapter 5 I reexamine the ethical challenges of PGD and predictive genetic testing in light of the account of responsibility I endorse. I also demonstrate its critical relevance for evidence-based medicine and bioethics. | |
