The Ethics of Genetic Technology: Knowledge, the Common Good, and Healing. The Case of the Human Genome Project

Dissertation, Boston College (2000)
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Abstract

Genetic technology raises a multiplicity of ethical issues. I propose three ethical resources to address these problems within pluralist societies. I articulate an interdisciplinary study of the knowledge genetics is offering today, while the common good and healing set the framework of reflection. ;In Part One, on knowledge, I focus on the Human Genome Project . After having offered its reasoned historic overview, I examine the ethical material funded through ELSI, i.e., the program devoted to explore the Ethical, Legal, and Social Implications of the HGP. In this material, the largely present ethical approach privileges individuals' autonomy, but a more socially-minded attention can also be traced. This finding leads me to examine autonomy, as it is expressed by the four principles of bioethics, after having explored the metaphors and rhetoric present in the literature that deals with genetic progress. Finally, Michel Foucault's philosophical contribution inspires my critical reading of market dynamics and of the impact of genetic technology on our self-understanding. ;Part Two values the common good as an essential ethical goal to be pursued. Four cases individuate elements that qualify the common good, i.e., interdependence, participation, and solidarity. These examples concern the healthcare database in Iceland, the prevention of beta-thalassemia in Cyprus, the exploitation of an Amazonian tribe, and the case of experimental therapies for rare diseases. The more systematic analysis of the common good within the Roman Catholic tradition, as well as outside it, integrates and expands the emphasis on interdependence, participation, and solidarity. ;Part Three introduces healing as third ethical category because of the individual and social needs for healing addressed by genetics. First, I study a genetic disease, i.e., Huntington's Disease with the fivefold approach presented in Part One. Then, I add insights offered by my reading of a New Testament healing story, i.e., the man possessed by demons in the region of the Gerasenes . ;The interdisciplinary ethical approach that I attempt aims to value, and enter in discussion with, a multiplicity of interlocutors as well as ethical resources

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