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Quest for a Deaf Child: Ethics and Genetics Teresa Blankmeyer Burke

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Quest for a Deaf Child: Ethics and Genetics Teresa Blankmeyer Burke View metadata, citation and similar papers at core.ac.uk brought to you by CORE provided by University of New Mexico University of New Mexico UNM Digital Repository Philosophy ETDs Electronic Theses and Dissertations 7-2-2011 Quest for a Deaf Child: Ethics and Genetics Teresa Blankmeyer Burke Follow this and additional works at: https://digitalrepository.unm.edu/phil_etds Recommended Citation Burke, Teresa Blankmeyer. "Quest for a Deaf Child: Ethics and Genetics." (2011). https://digitalrepository.unm.edu/phil_etds/14 This Dissertation is brought to you for free and open access by the Electronic Theses and Dissertations at UNM Digital Repository. It has been accepted for inclusion in Philosophy ETDs by an authorized administrator of UNM Digital Repository. For more information, please contact [email protected]. QUEST FOR A DEAF CHILD: ETHICS AND GENETICS BY TERESA BLANKMEYER BURKE B.A., Biology, Ethics & Society, Mills College, 1993 M.A., Philosophy, The University of New Mexico, 2003 DISSERTATION Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Philosophy The University of New Mexico Albuquerque, New Mexico May, 2011 iii Dedication I dedicate this dissertation to my family. To my parents, Richard and Carol Blankmeyer, for the love, support, and encouragement they have shown me through the years, and for raising me in a home where books and ideas were central. To my children, Austin Burke and Hypatia Venerable, for waiting SDWLHQWO\VRPDQ\WLPHVZKLOHPRPILQLVKHGWKLV³RQHODVWVHQWHQFH´IRU teaching me about parenting as I was writing about it, and for the questions ± oh the questions! And to Lloyd, who listened, ran errands, cooked, cleaned, hosted visitors, DQGFDUSRROHGGXULQJDOOWKRVHWLPHVZKHQ,QHHGHG³MXVWDIHZPRUHKRXUV´DQG who never complained. Not once. Thank you all. iv Acknowledgements A special round of applause goes to Dr. Barbara Hannan, my dissertation chair, whose steady encouragement and insightful feedback kept me going through this long process. I have learned much from her example as a scholar and teacher of philosophy. Many thanks as well to my dissertation committee members Dr. Russell Goodman and Dr. Iain Thomson, for their helpful comments and shaping my professional development in so many ways. My constant gratitude goes to Dr. Phyllis Perrin Wilcox, my dissertation committee member and mentor, who showed me just how a deaf woman could be a committed scholar, tenacious advocate, visionary change agent, and inspiring teacher. I could not have done this without her. There are so many others who have helped along the way. I am especially appreciative for the support and feedback from Dr. Joan Gibson, brought me into the field of bioethics at UNM when I was just getting started and whose feedback has been enormously helpful through the years. Dr. G.F. (Fred) Schueler, my original dissertation advisor, was so instrumental in KHOSLQJPHVKDSHWKLVSURMHFWLQWKHHDUO\VWDJHV,WZDVLQ)UHG¶VFODVVHVWKDW,ILUVWOHDUQHG how to think like a philosopher. I aspire to follow his example of intellectual and personal integrity. A very special shout out goes to Dr. Vardit Ravitsky for introducing me to the conditions of exit argument and for countless hours of discussion about genetics and bioethics in Santa Fe, Washington, and Philadelphia. *DOODXGHW8QLYHUVLW\DQG'U-DQH)HUQDQGHVSURYLGHGPHZLWKWKH3UHVLGHQW¶V Fellowship during a crucial point in time. I am grateful for this, and also acknowledge the support I received from the Gallaudet University Philosophy and Religion Department from my department chairs, Dr. Jane Hurst and Dr. Barbara Stock. I am especially appreciative of WKHJLIWRIWLPHYLDUHGXFHGFRXUVHORDGVDQGIRUWKHRSSRUWXQLW\WRRIIHUWKHXQLYHUVLW\¶VILUVW course on bioethics and the Deaf community. I am grateful for the support and community provided by the Deaf Academics group. Writing a dissertation is always a solitary process, but even more so when direct FRPPXQLFDWLRQDFFHVVLELOLW\ZLWKRQH¶VJUDGXDWHVWXGHQWFRKRUWLVDFKDOOHQJH7KLV international group of VLJQLQJ'HDIVFKRODUVSURYLGHGDYHQXHIRUPHWRKDYHWKRVH³ZDWHU FRROHUFKDW´PRPHQWVLQF\EHUVSDFHDQGDWFRQIHUHQFHV9HU\VSHFLDOWKDQNVWR&RUULH Tijsseling, Breda Carty, Antti Raike, Carol Padden, Tom Humphries, Billy Ennis, Joe Murray, Derek Braun, Carrie Solomon, Paddy Ladd, Alison Bryan, Steve Emery, Hilda Haualand and Christian Vogler. v Thanks are due to the President of the World Federation of the Deaf, Dr. Markku Jokinen, who immediately recognized the importance of bioethics and genetics to the Deaf community and made it possible for me to deliver a plenary address on this topic at the World Federation of the Deaf Congress XV in Madrid, Spain, enabling me to engage with, listen, and learn from Deaf leaders throughout the world. Their comments not only enriched my research, but serve as a constant reminder of the vital connection between the academy and the advocates on the ground. Sign language interpreters are bound by a code of ethics that includes confidentiality. ,¶OOKRQRUWKLVDQGWKHm by not naming anyone, but I would be remiss if I did not acknowledge my great good fortune in getting to work with so many talented professionals in locations as diverse as Riyadh, Berlin, London, and Albuquerque. Their seamless interpretation offered me entry into many scholarly worlds, allowing me to obtain valuable feedback from audiences. $URXQGRIKLJKILYHVLVGXHP\EHVWIULHQG'LDQD%HUQDZKRGLG\HDUVRI\HRPDQ¶V work by listening to me puzzle out philosophical conundrums and through her earnest TXHVWLRQVKHOSHGPHEUHDNWKHPGRZQLQWROD\SHUVRQ¶VWHUPV And last, but never least, a two-handed THANK YOU (in ASL) to the Deaf community. You welcomed me into the community, tolerated my endless questions, challenged my assumptions and interpretations, and let me know when I was not clear. In doing so, you improved the quality of my work immensely. You are the reason for my work. This is my gift to you. QUEST FOR A DEAF CHILD: ETHICS AND GENETICS BY TERESA BLANKMEYER BURKE ABSTRACT OF DISSERTATION Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Philosophy The University of New Mexico Albuquerque, New Mexico May, 2011 vii QUEST FOR A DEAF CHILD: ETHICS AND GENETICS BY TERESA BLANKMEYER BURKE B.A., Biology, Ethics & Society, Mills College, 1993 M.A., Philosophy, The University of New Mexico, 2003 Ph. D., Philosophy, The University of New Mexico, 2011 ABSTRACT This project investigates the question of whether it is morally justifiable to use genetic technology in order to bear a deaf child. Even though it may seem counterintuitive to hearing people, deaf people often desire to have deaf children. Reasons for this vary, but RIWHQLQFOXGHDGHHSORQJLQJWRKDYHDFKLOGZKRFDQIXOO\SDUWLFLSDWHLQRQH¶VOLQJXLVWLFDQG cultural community. Many view using genetic technology to ensure or create a child with a disability as harmful and a dereliction of parental duty; dismissing the desire for a deaf child as misguided at best. I begin by situating this desire for a deaf child in historical context, identifying and analyzing ethical claims regarding deaf education, eugenics, civil rights, and cochlear implant surgery. Following this, three arguments are analyzed to consider whether, in certain situations, it may be morally justifiable to use genetic technology to bear deaf children. The first is a consequentialist approach to genetic selection, using a variation of the Non-Identity argument to evaluate the potential harms and benefits to the child who is born deaf. For genetic alteration, I evaluate an argument with roots in deontology that considers viii the notion of bodily integrity as a principle of human dignity and autonomy, expanding it to include genomic integrity. The final chapter considers the question of deafness as a moral harm, including the question of harm within the family unit and harm to society. ,FRQVLGHUWZRPDMRUREMHFWLRQVWRWKHVHDUJXPHQWVWKHFKLOG¶s right to an open future, and conditions of exit. In the right to an open future argument, parents have a duty to HQVXUHWKDWXQGXHUHVWULFWLRQVDUHQRWSODFHGRQWKHFKLOG¶VIXWXUH7KHFRQGLWLRQVRIH[LW argument asserts that parents have a duty to prRWHFWDFKLOG¶VSRWHQWLDOIXWXUHLQWHUHVWLQ exiting her cultural community. I conclude that these objections rightfully present challenges to the three arguments I consider, but are currently insufficient to fully overcome them and need further refinement. ix TABLE OF CONTENTS Chapter 1 Introduction........................................................................................................... 1 Introduction to the Problem .......................................................................................... 1 The Impact of Biotechnology on the Deaf Community Today .................................... 8 An Overview of the Dissertation ................................................................................ 16 Chapter 2 Historic Context and the Deaf Community ...................................................... 25 The Desire for a Deaf Child ........................................................................................ 25 Benefits and Burdens: Deaf Education in the 19th Century ....................................... 30 Benefits and Burdens: Eugenics and the Deaf Community ........................................ 39 Justice Claims and Rights: DPN and Cochlear Implant Surgery ................................ 50 An Argument Analysis of the Ethical Issues in Cochlear Implant Surgery ............... 59 Chapter 3 Genetic Selection: Choosing Deaf Babies ........................................................
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