Jewish Bioethics in the Age of Genetics

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Jewish Bioethics in the Age of Genetics University of Tennessee, Knoxville TRACE: Tennessee Research and Creative Exchange Doctoral Dissertations Graduate School 8-2001 Technology and Tradition: Jewish Bioethics in the Age of Genetics Toby Lee Fey University of Tennessee - Knoxville Follow this and additional works at: https://trace.tennessee.edu/utk_graddiss Part of the Philosophy Commons Recommended Citation Fey, Toby Lee, "Technology and Tradition: Jewish Bioethics in the Age of Genetics. " PhD diss., University of Tennessee, 2001. https://trace.tennessee.edu/utk_graddiss/2056 This Dissertation is brought to you for free and open access by the Graduate School at TRACE: Tennessee Research and Creative Exchange. It has been accepted for inclusion in Doctoral Dissertations by an authorized administrator of TRACE: Tennessee Research and Creative Exchange. For more information, please contact [email protected]. To the Graduate Council: I am submitting herewith a dissertation written by Toby Lee Fey entitled "Technology and Tradition: Jewish Bioethics in the Age of Genetics." I have examined the final electronic copy of this dissertation for form and content and recommend that it be accepted in partial fulfillment of the requirements for the degree of Doctor of Philosophy, with a major in Philosophy. Dr. Glenn C. Graber, Major Professor We have read this dissertation and recommend its acceptance: Dr. Mary Ann Handel, Dr. Jonathan Kaplan, Dr. Betsy Postow Accepted for the Council: Carolyn R. Hodges Vice Provost and Dean of the Graduate School (Original signatures are on file with official studentecor r ds.) To the graduate Council: I am submitting herewith a dissertation written by Toby Lee Fey entitled “Technology and Tradition: Jewish Bioethics in the Age of Genetics.” I have examined the final copy of this dissertation for form and content and recommend that it be accepted in partial fulfillment of the requirements of the degree of Doctor of Philosophy, with a major in Philosophy. Dr. Glenn C. Graber Major Professor We have read this dissertation and recommend its acceptance: Dr. Mary Ann Handel Dr. Jonathan Kaplan Dr. Betsy Postow Accepted for the Council: Dr. Anne Mayhew Interim Vice Provost and Dean of the Graduate School (Original signatures are on file in the Graduate Student Services Office.) TECHNOLOGY AND TRADITION: JEWISH BIOETHICS IN THE AGE OF GENETICS A Dissertation Presented for the Doctor of Philosophy Degree The University of Tennessee, Knoxville Toby Lee Fey August 2001 ii ACKNOWLEDGEMENTS While everything we do and everything we say reflect our connection with others, some projects attest to that interconnectedness more than others – and this is one such project. I am grateful to many people for making this work possible. The faculty of the Philosophy Department at the University of Tennessee continued to challenge me as a philosopher and helped me to develop the skills that I will carry with me throughout my work. When their challenges got particularly trying, Ann Beardsley and Marie Horton were always there with words of encouragement and solutions to (often incredibly tedious) logistical problems. I am also grateful to the University of Tennessee for awarding me the Yates Dissertation Fellowship for assistance in completing my dissertation this year. I owe a special debt to Glenn Graber, my dissertation chair, for reading countless drafts of this work, for offering comments and suggestions, and for putting up with my endless emails expressing concern and frustration. Glenn was always more than willing to meet, both in person and “virtually,” and chat about the project and its direction. Glenn was also a great help in securing my first official employment, and for his suggestions and encouragement I will be eternally grateful. This work is also a reflection of the detailed comments and suggestions offered by the remainder of my committee: Mary Ann Handel, Jonathan Kaplan, and Betsy Postow. There is no question that the project is more focused, more accurate, and more clearly expressed because of their input. iii A special thank you also goes to Charles Reynolds in Religious Studies. Charlie was always there with words of encouragement and suggestions for how to just “get it done.” His confidence in me inspired confidence in myself, and I truly appreciate all of his efforts on my behalf. The greatest debt is the one that I owe to my friends for listening to me complain, empathizing with the dissertation-writing process, and encouraging me to continue. Anne Kummer Wells was an invaluable friend to me from the very beginning of this program and continues to be important in my life. Alissa Garber Putman, while in a different doctoral program, has always been ready to listen to and commiserate with my frustrations. Annette Mendola, Carolyn Ells, and Jim Okapal have always been ready with encouragement and advice when I was in danger of faltering. Mandy Foster has helped me to put the tasks in which I am engaged into perspective and has been unfailingly encouraging -- for her friendship I will be forever grateful. Similarly, David Reisman has often lent me a sympathetic ear, and has offered wonderful distractions from the pressures of academia. I have known Devora Shapiro only for a relatively short time, and yet my debt to her is large, for being a good friend when one was desperately needed. And most importantly, Barbara Russell has contributed to the completion of this work in many ways – from not letting me give up to reminding me that there is a reason that only a few cross the finish line in this important race. The debt I owe to her for her encouragement and friendship is immeasurable, and I can only hope to repay such kindness with support of my own. I iv wish her, and all of my friends, happiness, love, and success in whatever arena they so choose. v ABSTRACT The thesis that I defend in this project is that utilizing a care ethic is helpful in understanding the decisions reached by the observant Jewish community regarding medical care and the influence of genetics on those decisions. Previous analyses, as forms of “traditional” Jewish bioethics, have focused exclusively on the religious laws and principles that determine right action for this group. But it seems to me that identifying other patterns and core elements specific to this group will further illuminate and clarify the decision-making process. Specifically, the importance of relationships, especially family, is a pattern that must be addressed when analyzing the concerns of this community. Refocusing the discussion on relationships, on the “web of interconnectedness” that joins all the members of this community (and these members to other communities as well) will allow us to both make sense of some disparate decisions regarding genetic screening and information, and will allow us to make predictions about future responses this community might make. Hence, in order to understand or even predict the responses that this community will have to issues involved with genetic screening, we will need to understand the application of the relevant religious laws and principles in terms of the community’s emphasis on family relationships. I discuss three particular diseases that have a genetic component, Tay- Sachs Disease, breast cancer, and colorectal cancer, in order to demonstrate the traditional approach and its shortcomings. I will show that augmenting traditional vi Jewish bioethics with an ethic of care is actually not a new element, but instead describes the process that has been occurring all along. vii PREFACE Judaism is more than a religion; it is a culture, a tradition, a people. The rich history shared by the members of this community binds them together, as do the rituals that have evolved to remember and sanctify those events. Jews fast on the anniversary of the destruction of the Temples and rejoice on the day the Persian king spared the lives of his Jewish subjects. None of these celebrations or lamentations are conducted in private; rather, Jews gather with family and friends in times of joy as well as in times of grief. The celebration of Passover is commemorated by a glorious feast where, together with family and friends, Jews recount the story of God’s wonders in Egypt. And at the loss of a loved one, a formal period of mourning for seven days is observed, during which time those whose lives the individual has touched come by to console and to grieve with the family. Even at the most personal holiday, Yom Kippur, where Jews must individually atone for their sins and ask for forgiveness from both God and those whom they have hurt, they assemble together with their community in the synagogue, in recognition that each individual is about the same task. They pray together, laugh together, cry together, and live together. It is this notion of togetherness, of community, which is so fundamental to understanding the Jewish people. It is a shared history, but it is so much more: shared work, shared worship, shared life. In this interconnected community, what happens to one happens to all. A death in one family means a meal preparation and a shiva call viii for another. The birth of a son to a young couple means attendance at a brit milah for all. Nothing in this notion of community and interconnectedness changes when we shift our focus to the medical sphere. Rather, any medical decisions made by members of this community are affected by this interconnectedness. Clearly principles and religious obligations will play a role in determining what the right action is for this group of people, but so will the emphasis on family and community. Only by understanding this background can we make sense of the choices made in a medical context. For the purpose of this project, I am interested in analyzing a specific area in the medical realm, that of advances in genetic medicine.
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