geneticscreening

=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
 * Introduction to intersecting processes

2. Reading
 * Preview the activity for the class (#3).
 * Make notes to help you contribute to the activity while reading Rapp, "Moral pioneers" and Paul, "The history of newborn phenylketonuria screening"
 * 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, there are many voices that could be listened to in understanding how to use new genetic information (Rapp 1988).

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).

include component="page" wikiName="crcrth645" page="geneticscreeningh" editable="1"