Theology, Disability and the New Genetics: Why Science Needs the Church

What does it mean to have a disability? Who comprises the “target audience” for genetic counseling services, and what are its goals? While these questions are not new to genetic counselors, the authors of Theology, Disability and the New Genetics ask them from Christian theological perspectives. Provocative, and perhaps controversial, this attempt at science–religion dialogue may be useful for health providers to learn some theological perspectives, and perhaps for Christian theologians to glimpse the world of genetics. The book is the outcome of a 2005 symposium at University of Aberdeen Centre for Spirituality, Health and Disability. It is an edited volume of individual chapters written by (mostly) theologians (one self-identifying as having a disability), ethicists, a neonatal nurse who is the mother of a child with Down syndrome, a couple of physicians, and a virologist/geneticist. Divided into four main sections, the book includes discussion of various definitions and views of disability (Part 1), an historical and descriptive account of eugenics (Part 2), a review of molecular genetics and genetic epidemiology (Part 3), and theological reflections on disability and genetics (Part 4). Despite the promise of the book's title and structure, the practical usability of the text may be limited to Christian readers. This limitation is hinted in the book's subtitle, “Why Science Needs the Church.” It is informative that the text is not subtitled, “Why the Church Needs Science”, or, better yet, “Why Science and the Church Need Each Other.” The latter two titles would have been more inviting of dialogue, particularly since the editors’ perspective is primarily from within theology. Thus, the book is enlightening and compelling if the reader is willing to accept faith-based beliefs such as “…the fact that human beings [are] particular objects of God's love and salvific intentions…by virtue of our Adamic inheritance” (p. 11); or “…the transformative fact that God is the decisive player in all development with the new genetics” (p. 15). Emphasis on these assumptions may serve to weaken the theologians’ arguments for non-Christian readers. Many of the arguments and topics are not necessarily “new”, despite the implication in the title. For example, the social model of disability—acknowledging that “disability” is socially constructed and not a static characteristic of individuals—has been around since at least the 1970s (Iezzoni and Freedman 2008). The use of person-centered language (e.g., “child with Down syndrome”, rather than “Down syndrome child”) and patient-centered care are certainly not new to genetic counseling. Similarly, practitioners of medical genetics and genetic counselors daily confront questions related to eugenics, abortion, prenatal diagnosis, and the “expressivist argument” (i.e., prenatal screening for disabilities could comment adversely on the value of persons now living with those disabilities). Although “new” is not explicitly defined in the text, it does not quite seem to be an appropriate descriptor in the title, especially since so much of the text focuses on prenatal diagnosis for Down syndrome, which has been occurring for nearly four decades. In contrast, two chapters are devoted to describing the state-of-the-science. Although it is intended for a lay audience, one of the chapters gives a highly technical account of molecular genetics and epigenetics without much comment on the topic of disability. Another chapter gives a much more comprehensible account of genetics, focusing on the shift from genetics to genomics and accompanying epidemiologic studies. It is in this chapter that we find the greatest promise for dialogue between theology and science: “The elimination of disability is neither an aim nor a possibility (without eliminating the human species), but the alleviation of suffering, through genetic science, is both” (p. 133). In a subsequent chapter, theologians ruminate on this genetics primer. The resultant commentary highlights complexity and uncertainty in genetics, with which genetics professionals will be all too familiar, but it is placed in contrast to the certainty that faith provides. There is an accompanying digression into different claims about evolution, without tie-in to the disability topic. “[The theologians] felt that their critical powers depended precisely on their ability to take evolution not as a truth-claim having equal validity to the Christian creeds and their claims about Christ, but rather as a provisional and developing human account of created reality” (p. 153). What results is a rank-ordering of Christian claims above those of scientific claims, and this likely squelches any chance of dialogue. Ironically, as a reader I found myself asking “Why does science need the church?” Nowhere does this become more apparent than in Chapter 5 when Amy Laura Hall guides the reader through the history of eugenic philosophy and practices in the United States, largely focused on the contributions of the Christian church. Indeed, this chapter suggests medical practice might be wary of any input from these faith traditions. Further, there seems to be some assumption that the Church is necessary to provide a moral compass within medical practices. Yet, there is no basis given for a moral monopoly by the Christian church, particularly in a non-theocratic society. In fact, despite claims throughout the book that science and the Church have similar goals, this is not always clearly the case. For example, while most genetic counselors likely cringe at Justice Holmes’ infamous statement from 1927, “Three generations of imbeciles are enough,” it does seem contrary to public health goals to propose the substitute, “Three generations of people with mental retardation are not enough” (p. 106). Other Christian doctrines discussed in the book might also run contrary to public health goals, such as redemptive suffering, or even divine will for suffering. Despite these concerns, perhaps the greatest value of this book is that it raises fundamental questions about how disability can be conceptualized and what a successful genetic counseling intervention might look like. Discrediting utilitarian views of disability, and promoting life—disabled or not—as a gift of a person who is socially and genetically connected to other human beings, if not to all life, is worth serious consideration for all who practice genetic medicine.