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by Peter Conrad and Jonathan Gabe (editors)
Blackwell Publishers, 1999
Review by Christian Perring, Ph.D. on Dec 10th 2002

Sociological Perspectives on the New Genetics

This collection of nine academic articles with an introduction written by the editors provides a very helpful introduction to the sociological discussion of genetic medicine.  Seven of the articles are by researchers based in the UK, with just one by authors from Canada and another from the US.  The book is divided into three sections:

·        Structure and Production of Genetic Knowledge

·        The Social Meanings of Genetics

·        The Social Impact and Implications of Genetics

As with a great deal of medical sociology, the guiding assumption is that the sociology of the science and medicine of genetics reveals underlying normative attitudes beneath the guise of apparent neutrality.   None of the authors explicitly endorses the strong program in the sociology of science—the thesis that science can be completely explained through the sociological study of the activity of scientists rather than through an appeal to the rationality of scientific methodology—but it is a necessary supposition in medical sociology that the study of the words and actions of medical researchers, health care professionals and the popular explanations of biological science reveals something important about the field that is not captured by a narrow focus on the “medical facts.” 

The great danger for medical sociology, as with much of the rest of the field of sociology, is that what it purports to show is already common knowledge, and the conclusions of scholarly papers are utterly banal.  For the most part, the authors in Sociological Perspectives on the New Genetics manage to avoid this danger.  For genetics, the most obvious moral concern is that we avoid repeating the ugly past of Social Darwinism and the international Eugenics movement of the late nineteenth and first half of the twentieth century.  This history, which involved discrimination against and the forced sterilization of people with cognitive deficits, mental illness, and genetic disorders has been well documented, although it is still a surprise to most people that the Eugenics movement had wide popularity in the US and many European countries in the early twentieth century.  The Nazi quest for the master race and the resulting Holocaust was certainly the most horrific realization of the goals of the Eugenics movement, but many thousands of people in the rest of the world, including the US, suffered as a result of the endorsement of the ideology of Eugenics by politicians, policy makers and the judiciary at the highest level.  It is still shocking to read the opinion of Theodore Roosevelt, that, “Criminals should be sterilized and feeble-minded persons forbidden to leave offspring behind them” (quoted in Jeremy Rifkin, The Biotech Century, p. 117).  Modern genetics tries hard to separate itself from this appalling history, but the central question for those assessing it is whether it succeeds.  The sociologists in this collection tend to approach this issue with a critical attitude, or what one might call a hermeneutics of suspicion.

Understanding the concept of genetic disorder is essential for any normative evaluation of genetic medicine.  In “Genes as drugs: the social shaping of gene therapy and the reconstruction of genetic disease,” Paul Martin gives a fascinating history of the growth of gene therapy and the expansion of the concept of genetic disorder to a broad range of common acquired conditions, including cancer and heart disease.  He argues that gene therapy technology “moved from being a largely surgical procedure for the treatment of rare inherited disorders to a novel form of drug therapy for cancer and other acquired diseases” (p. 31).  The expansion of the domain of genetics to include common disorders is an important phenomenon that deserves careful scrutiny.

The question of who has a genetic disorder is also addressed by Elizabeth Ettore in “Experts as ‘storytellers’ in reproductive genetics: exploring key issues.”  She analyzes a qualitative study of genetic expert’s accounts of the use of prenatal genetic screening in four European countries, and much of the paper is devoted to what people said in interview.  A central issue for the paper is what counts as the experts’ area of expertise, and to what extent they implicitly or explicitly adopt normative stances, and how their views may influence the rest of society.  Similar themes are addressed by “Defining the ‘social’: towards an understanding of scientific and medical discourses on the social aspects of the new human genetics,” by Sarah Cunningham-Burley and Anne Kerr.  They focus on the writings of genetic experts in academic journals, and examine how social and ethical concerns are discussed.  They take a rather stronger position in their paper than Ettore, arguing that there is a tension between the supposed neutrality and objectivity of scientific and medical knowledge and the morally loaded positions taken by scientific and medical experts.  They even propose that social scientists could form “alliances with critical scholars in the scientific, medical and public health disciplines to undermine the notions of value-free science and an ignorant public, to counter indifference towards eugenics, and to challenge the notion that ‘biological disease’ can be separated from the social world” (p. 163).  They believe it is important to “break down the traditional divide between scientific experts and others” (p. 163). 

Other papers address the representation of the new genetic medicine in popular discourse.  In “The human drama of genetics: ‘hard’ and ‘soft’ media representations of inherited breast cancer,” Lesley Henderson and Jenny Kitzinger survey the coverage of the “breast cancer gene” in British newspapers, magazines and television shows.  Their main point is that these media focus on “human interest stories” such as prophylactic mastectomies and the experiences of women from families in which the incidence of breast cancer was high.  The authors point out the foregrounding of genetic issues can distort the public’s understanding of cancer, leading to a neglect of environmental factors.  The “soft news” approach relies on the drama of personal concerns heightened by the uncertainty about the future rather than the “hard news” of scientific facts.  Most news media are increasingly using “soft values” in their reporting, and this is an important change.  Nina Hallowell also addresses the issue of breast and ovarian cancer in her paper, “Doing the right thing: genetic risk and responsibility.”  She interviewed women referred for genetic counseling in order to examine their understanding of genetic risk and how it affected their decision-making.  The paper contains many quotations from those interviews, illustrating common themes.  Hallowell argues that people in the late twentieth century tend to see their health as a matter of their individual responsibility, and people often act out of sense of moral duty towards their families.  This sense of duty is not just within one generation (such as a woman’s responsibility to her sisters) but also from one generation to the next (such as a woman’s duty to her daughter).  Hallowell suggests that the new genetics is changing our understanding of health, so that healthy people are recategorized as “at-risk.”  She expresses the concern that this, in conjunction with the gendered discourse of women as care-takers, may be disempowering and may constrain women’s choices.  At the same time, she suggests that there may also be a benefit in the “opportunity to reconfirm the self as a self-in-relation” (p. 116).

The issue of genetic risk is also central to the paper by Susan M. Cox and William McKellin, “‘There’s this thing in our family’: predictive testing and the construction of risk for Huntington Disease.”  The authors, based at the University of British Columbia, performed in-depth interviews with people at risk for Huntington’s disease and their relatives, before and after the disclosure of test results.  The sample size was relatively small, with 21 test candidates and 41 family members.  The paper groups the results of the interviews according to theme, and quotes liberally from the interviewees.  The authors aim to give some sense of the “lay constructions of risk” and the way that predictive testing modifies people’s thinking about the risk.  They emphasize that their subjects’ understanding is not based purely on scientific theories, but rather involves many other factors.  In a striking sentence, they explain that the test candidates and their families jointly engage in a complex social calculus of risk, which “is fluid and contingent rather than static, intersubjective rather than objective, and creative yet coherent” (p. 140). 

Alan Stockdale’s paper, “Waiting for the cure: mapping the social relations of human gene therapy research,” also includes some interviews with people with genetic disorders, in this case, cystic fibrosis, (CF). He also interviewed family members, physicians, researchers, and representatives of relevant industries and charities.  Stockdale makes a straightforward argument that the research into gene therapy for CF is taking up many resources with a very uncertain outcome.  He claims that the decision of the CF Foundation to focus on research for a ‘cure’ “has meant that the many other potentially competing needs of people with CF and their families, such as CF education, social support, and age-appropriate care, have been marginalized” (p. 93).  He highlights the relatively weak voice of patients and their families in the decision-making process on how to allocate resources, and he argues that even clinicians have had little opportunity and incentive to voice their skepticism about the current setting of priorities. 

Tom Shakespeare’s paper, “‘Losing the plot’?: Medical and activist discourses of contemporary genetics and disability,” has an elegant simplicity.  He compares and contrasts the way that medical experts and disability activists talk about genetic disorders.  In medicine, he identifies narratives of tragedy, narratives of optimism, and ignorance about disability.  Of particular interest is his claim that genetic discourses exhibit ignorance about what counts as a disability and what it is like to be disabled.  It may be startling for genetic researchers to read how some disability activists equate their work with that of the Nazi program of eugenics and euthanasia, although Shakespeare is careful to distance himself from such a stance and to point out that there are dangers in such an equation.  Also startling to many non-disabled people is that denial by disability activists that disability is an intrinsic property of the disabled.  While Shakespeare is clearly sympathetic to a social model of disability that places responsibility on society for disabling people who have physical and mental differences from the general population, he nevertheless identifies the weakness of a position that denies that the disabled have any impairment.  He argues that this fails to engage with the lived experience of impairment and the effect it has on people’s lives.  He comes to the somewhat banal conclusion that we need “nuanced and balanced accounts of the potential and the dangers of contemporary genetic research and practice” (p. 187).

These papers that focus on how experts and ordinary people conceptualize genetic disorders and inherited risk are important in trying to understand the impact of genetics on contemporary society.  The in-depth interviews and surveys of popular media are essential in seeing how scientific ideas get translated into popular discourse and affect the fabric of people’s lives.  However, it is worth keeping in mind that a more fully narrative approach can also be very helpful – the first person accounts of people with genetic disorders in their families are a vital resource for researchers and teachers of genetic ethics.  (See, for example, Life As We Know It by Michael Berube, Mapping Fate by Alice Wexler, or Choosing Naia by Mitchell Zukoff, for example.)

The final paper does not fit very well with the rest of the collection, either in style, content, or the format of its title.  “DNA identification and surveillance creep” by US authors Dorothy Nelkin and Lori Andrews, is written in more popular style than the other papers, and discusses the role of genetics in law enforcement rather than in medicine.  It sets out recent developments in the area, and spells out the concerns they have about the curtailing of personal liberty, the danger of error in DNA evidence, and the potential for abuse, especially as the science of behavioral genetics comes to play a greater role in identifying the perpetrators of past and future crimes.

Medical ethicists will find Sociological Perspectives on the New Genetics a valuable resource since medical sociology is generally not included in standard collections of articles on the topic, yet understanding the sociology of genetic medicine is essential when considering the role of genetics in contemporary society.  These papers are informative and approachable, and they give many references to the rest of the recent literature on genetics in medical sociology.  Although the papers are somewhat technical, it takes little work to sort through the jargon, and the book could be helpful in teaching genetic ethics at the undergraduate level or with medical students.  Highly recommended.

 

© 2002 Christian Perring. All rights reserved.

Christian Perring, Ph.D., is Chair of the Philosophy Department at Dowling College, Long Island. He is editor of Metapsychology Online Review. His main research is on philosophical issues in psychiatry. He is especially interested in exploring how philosophers can play a greater role in public life, and he is keen to help foster communication between philosophers, mental health professionals, and the general public.