Social negotiations around genetic screening

1. Introduction
The debate about the changeability of IQ test scores (Jensen vs. Lewontin) referred to the heritability of IQ test scores, but no actual genes. It also referred to the limitations and possibilities of education, but did not focus on specific educational projects—how they succeeded or failed and in what circumstances. In contrast, this session examines how specific groups (or "voices") in society shape or are involved in the application of knowledge about specific genes.

1b. Mini-lecture

• PKU--Substituting a genetic condition for chronic illness and second-generation effects
• Initial look at intersecting processes (which is the focus of next chapter)
  (Visual Aids)

2. Reading

• Preview the activity for the class (#3).
• While reading Rapp, "Moral pioneers" and Paul, "The history of newborn phenylketonuria screening", make notes to help you contribute to the activity.
• Secondary task: As you read Paul, use what she describes about the history to create a multi-stranded timeline (analogous to the ones in the mini-lecture), where time goes from pre-1960s to 1990s and the strands might include PKU people; diagnosis; care; social support and regulation; advocacy; research/science; and wider social context. Do not worry about getting this neat—it is simply an initial exercise in diagramming intersecting processes, which is the topic of the next session.

Paul, D. (1997). "Appendix 5. The history of newborn phenylketonuria screening in the U.S.," in N. A. Holtzman and M. S. Watson (Eds.), Promoting Safe and Effective Genetic Testing in the United States. Washington, DC: NIH-DOE Working Group on the Ethical, Legal, and Social Implications of Human Genome Research,137-159.

• Precis TBA

Rapp, R. "Moral Pioneers: Women, Men & Fetuses." Women & Health 13 (1/2, 1988): 101-116.

• Precis TBA

3. Activity
If the case of phenylketonuria (PKU) is any guide (Paul 1998), significant complexities should be expected to arise if neonatal genetic diagnosis and advice about risks and about possible protective measures become widespread. Moreover, just as PKU individuals are subject to diverse influences on their pathways of development over the life course (Rapp 1988), there are diverse influences to which PKU individuals are subject on their pathways of development over their life course.

In this light, design a forum to help supplement advances in genetic screening by leading communities to develop
a) greater tolerance for normal variation;
b) social measures to care for people suffering from abnormal variation; and/or
c) multiple voices/constituencies/ethical positions around gene-based medicine.

Steps

a. Guided freewriting: "My experience of tolerance (or intolerance) of normal variation, of caring (or lack of caring), and of discussion about gene-based medicine makes we think about...."

b. Discussion in pairs about what forms a "forum" could take.

c. Web-searching to learn about existing models of forums of the kind you consider in #b. Consult with instructor at some time during the searching step or the next design step.

d. Design a forum, making clear:

• i) What kind of forum;
• ii) Which of goals it focuses on and what specific issues/questions;
• iii) What the audience would be;
• iv) How it might be organized (what people or groups to get involved, etc.);
• v) How you would assess whether it helped and how to improve it; and
• vi) How it draws on what you learned from the readings (Paul, Rapp, and any others you find).

e. Present to class, 5 minutes each, with each student giving Plus-Delta feedback (on feedback sheets or form for students from a distance): Feedback that begins with an appreciation (plus or +) before making a suggestion for change (delta or Δ).

4. Synthesis and extensions:

• Rapp draws our attention to many constituencies and voices in the arena or reproductive interventions, in contrast to the dominance of white, male experts and a medical model: "Until we locate and listen to the discourses of women who encounter and interpret a new reproductive technology in their own lives, we cannot go beyond a medical model." Medical model = individual risks, benefits and choices (aided by dominant metaphors of human perfectibility and individuals holding within them their potential) vs. situated, social responses, e.g. social support for the disabled, Down syndrome support groups.

• Genetic purification—Consider this strong proposition: "I have heard some argue that prenatal diagnosis and selective abortion would reduce society's burden in having to give special care for very disabled people and thus free funds for general health care, education, etc. for the mildly disabled. I have also heard the strong counter-proposition that such “genetic purification” in practice works against tolerance for the usual range of variation and measures to care for the abnormal. To understand the logic of this proposition consider an analogy: The health and fitness boom of the 1980s seems to have reduced tolerance for plump, “overweight” people. Those who have kept themselves trim tend to think that overweight people ought also to be able to do something about their figures. In the light of this analogy, Rapp's articles, your own experience, and research into the published literature, discuss the contention about “genetic purification."
  • Genetic purification thought-piece by student in 2006

5. Connections and resources

• Taussig, K. S. et al. (2003) “Flexible Eugenics: Technologies of the Self in the Age of Genetics”. Pp. 58-76 in Alan Goodman, Deborah Heath and Susan Lindee, eds. Genetic Nature/ Culture: Anthropology and Science Beyond the Two Culture Divide. Berkeley, CA: University of California Press, pdf

• Genes and Human Disease, World Health Organization

• Yoxen, E. “Unnatural selection/Gene Therapy.” In Unnatural Selection?, Pp. 157-173. London: Heinemann, 1986.
  • Sequence of potential developments (Yoxen): prenatal screening & selective abortion -> somatic cell therapy -> germ cell (&early embryo) modification -> enhancement of specific genetic traits -> enhancement of more complex attributes.
  • Although, in Yoxen's view, there is no absolute technological inevitability in this sequence, each step would make the next more feasible. Yoxen proposes that the public should discuss the implications and so individuals can make choices that enhance their freedom, self-esteem and sense of responsible reproductive behavior. (How else could limits be implemented that check commodification and technological development? What contradicts these social determinisms?)
  • Public discussion of science does not necessarily mean direct involvement in technicalities, because public discussion that affects the possible directions of science does not stop with technical issues -- the gay liberation movement in the 70s made it possible for people to lobby hard for more AIDS research in the 80s while they probably would not have been listened to a decade earlier. Scientists who invoke fear of the public's direct involvement in technicalities may be suspected of having an interest in limiting public involvement or influence in political decision-making concerning the direction of science.

5b. Online forum, through which students can provide suggestions and resources for revising the chapter
5c. Adaptation of themes from the chapter to students' own projects of learning about or engaging with biology in its social context: Suggestions for how to do that:

• Design a forum that brings out multiple voices in your audience so as to enhance the critical thinking everyone does about your topic concerning biology in its social context.