Lysaught, M. Therese

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Marquette Universitye-Publications@MarquetteTheology Faculty Research and Publications Theology, Department of7-1-2003Review of Prenatal Testing and Disability Rightsedited by Erik Parens and Adrienne AschM. Therese LysaughtMarquette UniversityPublished version. Health Progress, Vol. 84, No. 4 ( July/August 2003): 49, 54. Permalink. © 2003Catholic Health Association of the United States.M. Therese Lysaught was affiliated with the University of Dayton at the time of publication.Prenatal Testing and Disability RightsLysaught, M ThereseHealth Progress; Jul/Aug 2003; 84, 4; ProQuest Centralpg. 49Prenatal Testing and Disability Rights Erik Parens and Adrienne Asch, eds. GCIJ1:qctIJJJ'1I Ullil'cl'sity 1'l'cs.,; WasiJiltlftlJlI, ])C, 2000, 392 pp., $23.9.1 (papcl'bacli) Is PRENATAL TESTING REALLY A PART Of good prenatal care? As the work of the Human Genome Project (H GP) pro-gresses, and genetic tests felr more con-ditions and variations become available, this will become a more diHicult ques-tion for clinicians, health care institu-tions, and bmilies. Many within the dis-ability rights community have increas-ingly challenged the unexamined assumption that prenatal testing for genetic disability is an unqualifIed good. The disability rights critique, however, has received little acknowledgment from the mainstream bioethics or medical community. In order to bridge this gap, the Hastings Center sponsored a two-year-long project that brought together members of the disability rights, bioethics, and medical communities. This book is the result of these efforts. The editors open the volume with a chapter that summarizes the main con-tours of the conversation -outlining the disability critique of prenatal testing feJr genetic disability, posing the counterar-guments offered by bioethicists, and ending with the recommendations on which the working group could agree. Tellingly, the editors note that the pro-ject participants could not reach agree-ment on any substantive questions (e.g., the meaning of parenthood, demarcat-ing genetic conditions felr which it might be reasonable to test fi"om those which it might be unreasonable to test). The only point on which participants could agree was that of informed consent. This in itself is a window into the difficulties of this book. After Part One, which includes the editors' summary and Cynthia Powell's overview of the practice of prenatal genetic testing in the United States, the book is subdivided into three additional sections. The six essays in Part Two examine the question of prenatal genetic testing in light of different understand-HEALTH PROGRESS ings of the meaning of parenthood. The five essays in Part Three grapple with what is known in this conversation as the "expressivist argument." Disabilities rights critics oppose prenatal testing felr genetic disability in part because it "sends a message" to persons with dis-abilities that they and their ilk arc of less value than other members of society. Prenatal genetic testing thereby "expresses" and actualizes this bclief Throughout this volume and particularly in this section, various bioethicists chal-lenge this argument. The final section, Part Four, addresses questions of policy-making, although only one of its five essays-that by J ef1i"ey Botkin-actually moves toward concrete policy recom-mendations. A discussion and evaluation of all eighteen essays is clearly beyond the scope of this review. I would therefore like to focus on four essays (beyond Parens and Asch's opening chapter) that I found most important and insightful. The first, Philip M. Ferguson, Alan Gartner, and Dorothy K. Lipsky's essay, "The Experience of Disability in Families: A Synthesis of Research and Parent Narratives," is essential reading for anyone working in perinatal medicine and genetic counseling. It not only help-fully traces historic shifts in familial understandings of disability. It more importantly reviews recent research tlnd-ings on family adaptation to raising a child with a developmental disability. This research unequivocally challenges standard cultural assumptions that chil-dren with disabilities arc undulv burden-some on f:1l11ilies. The authors find that E1l11ilies with disabled children Elre on average no better or worse than bmilies in general. Two of the most insightful chapters in the volume are those oflered by Bruce Jennings and Nancy Press. Jennings and Press, in separate essays, challenge the fu ndamental misu nderstandi ng that shapes most of the discussion in this book" As mentioned above, the disabili-ties rights critique opposes prenatal genetic testing because of "the message it sends" about the worth of disabled people. Too many authors in this vol-lime misconstrue this argument. They reduce it to the straw argument tint indiJlidual women or parents, lw using prenatal diagnostic technologies, are "sending a message" to disabled per-sons. Too much ink is spilt attempting to show how this is not the else. Jennings, in his essav, "Technologv and the Genetic Imaginar\': l'renenal Testing and the Construction of Disabilitv," righth' retI-ames the cxpres-sivist critique and argues that it is not indiJlidltcds that "send a message" to persons with disabilities but the entire infrastructure of genetic testing itself. Recognizing "the rCllitv-consrituting power of the technologv itself' emd "the illusion of freedom" that it can give, Jennings argues that seeing these ques-tions fi·om an individuellist pcrspecri\'e is na·,'ve. His fundamental argument illumi-nates the context in which indi\'idual decisions occur: "It is eas\, to lose sight of the enormous public apparatus of sci-entific research and testing bcilities, to say nothing of the enormous public (whether gO\'erIlmental or corporene) investment and expense thn genetic testing technology represents. It is breathtakingly implausible to chenelCtcr-ize the usc of genetic testing in obstetric practice in our society as 'pri\'eHe' in anI' sense" (p. 131). Press, in her essay "Assessing the Expressive Character of Prenatal Genetic Testing: The Choices Made or the Choices Made Avaihble," continues Jennings' argument. Like Jennings, Press tinds the individualistic construc-tion of prcnatal testing to be na·,\'e or, worse, intentionallv masking the pur-pose of prenatal testing as a tool of sociell polin'. She rcti"ames the discussion en a more fundamental ICITI them most of the rest of the essays recognize. "vVhen is the message," she asks, "in the case of pre-natal testing and who are thc scnders and receivers?" (p. 21()). Press's chapter is rooted in her own anthropological research with women undergoing the MSAFP (maternal serum alpin I"<:topro-tein) test. Her findings on how the elCtu-al meaning and purpose of this test became encoded and obscurcd in profes-sional literature and patient undersLmd-ing provide a dc\'astating critiq ue of the CIJIlti71ltcd 071 fin!TC 54 JULY AUGUST 2003 • 49 BATON ROUGE'S "VIRTUAL CLINIC" Continued from page 35 "C ollaboration" has real meaning in Baton Rouge. 75 percent of the applicants come seeking dental help. Finding aff()l·d-able dental care has always been diffI-cult in the greater Baton Rouge area. General dentists arc needed to serve as initial providers. Even so, because patients arc a marginalized popula-tion that tends to neglect its oral health, everyone of the "clinic"'s dental specialties is over utilized. Surveys have shown that people in Louisiana have a history of accessing their medical care through emergency rooms of the statewide "charity hos-pital" system (community hospitals, including LSU-Earl K. Long, under the direction of the LSU Medical School). The virtual clinic is working to change those patterns by encour-aging people to go to primary care physicians for preventive and educa-tional health care. Program organiz-ers know that people who have regu-lar medical care arc less likely to ignore symptoms until they become so severe that they require a trip to the emergency room. Today, for the first time in their lives, thanks to the Greater Baton Rouge Community Clinic, many area residents have charts on file in physi-cians' and dentists' offIces. Because they do, they arc able to seek medical and dental care without the loss of income that often occurs when one is forced to take time to seck treatment. Preventive care is now a reality for them. "Collaboration" is a word that gets thrown around a lot these days, but in the Baton Rouge area it has real meaning. The Greater Baton Rouge Community Clinic is a case of good people helping good people. 0 54 • JULY - AUGUST 2003 BOOK REVIEWS Continued fhml pacqe 49 routinized practice of prenatal testing. As with the essay by Ferguson and his colleagues, it's amazing what a differ-ence data makes. The fInal essay worth reading is that by Jeffrey Botkin, entitled "Line Drawing: Developing Professional Standards for Prenatal Diagnostic Services." Elsewhere Botkin has attempted to outline criteria for how society or the medical profession might reasonably distinguish between genetic tests that ought properly be oHered and those that ought not. Here he takes a different approach. I-Ie works through the process of clinical decision making, as it works in other areas of medicine, to provide the beginning of a template fiJr how medicine might work toward devel-oping reasonable limits for the applica-tion of prenatal tests, especially as the outcomes of the HGP make tests for more genetic variations available. In closing, I would like to raise three additional points that indicate the deeply troubled framework within which this particular conversation occurred. First, as is made clear from the outset and reit-erated in too many of the essays, the dis-cussion is constrained by its allegiance to pro-choice orthodoxy. An absolutist pro-choice position is adhered to dog-matically, even by those who wish to criticize this particular choice against individuals with disabilities. But their insights into the humanity of the fetus and the social ramifications of genetic testing f()lIowed by selective abortion arc not allowed to raise questions for the practice of abortion more broadly con-strued. This introduces a fundamental incoherence into the project. Moreover, this eliminates from the conversation those with significant reli-gious, especially Catholic, perspectives. What one finds here is strictly a secular exchange. It remains amazing to this author to fInd a book on disabilities-published by Georgetown University Press, no less-in vvhich no reference to the work oOean Vanier and the commu-nities of L' Arche * appears. A second incoherence emerges f)·om an obvious omission ti·om the structure of the project. While Part Two f(lCUSeS on the meaning of parenthood, no essays treat the meaning of children themselves. Clearly these arc related, but the essays on parenthood f(lCUS almost exclusively on what it means to or t(lr the parents to have a child. There is little if any attention paid to the meaning and value of children in and of themselves, the societal value of children, or the reli-gious or cultural understandings of chil-dren, among other things. In a project on prenatal testing, this remains a puz-zling omission. Questions concerning children are, of course, substantive ques-tions, and this omission, no doubt, reflects the inability of the project to engage substantive issues. r;inally, one docs not get a sense fi·om the essays that anyone who participated in the project came away hum the two-year con versa tion fu nd amen tall y changed. I t docs not bode well f(lr the social embodiment of this debate that so much time, money, efl(lrt, and intellec-tual engagement resulted in so little per-suasion of interlocutors on fundamental, su bstantive points. All in all, both the weaknesses of the volume and the contributions of the five essays outlined above make this an important book for health care profCs-sionals who work in the areas of genetics and prenatal care, t()r institutional lead-ers who must discern how to appropriate genetic technologies into the int'·astruc-ture of their institutions, and all others concerned about how technologies increasingly constrain choice and silently achieve social ends. M. Therese Lysaught, PhD Associate Professor Department of Religious Studies Uni)Jcrsity of Dayton j)ayton) () H * I,' Archc, founded by Jean I,allier, is an international federation of COl1lrl11111itics or people with learning disabilities. Information concerning its U.S. affiliate is available at \l'WIV. larchellsa.org/abollt l.htm. HEALTH PROGRESS 

Review of \u3cem\u3ePrenatal Testing and Disability Rights\u3c/em\u3e edited by Erik Parens and Adrienne Asch

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Review of \u3cem\u3ePrenatal Testing and Disability Rights\u3c/em\u3e edited by Erik Parens and Adrienne Asch

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