Critical Bioethics

Critical Bioethics is a Social Science class taught by Jennifer Hamilton.

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Course Description
This course provides students with an introduction to the field of bioethics from a social science perspective. Using perspectives from legal studies, ethics, anthropology, and the social studies of science, we will investigate the emergence of bioethics both as a field of inquiry and as a regulatory discipline. We will explore the historical development of medical research in the West as well as larger questions about the growing role of bioethics in contemporary biomedical research and clinical practice. Topics include the politics of health care; cross-cultural issues in bioethics; the globalization of clinical trials; issues of informed consent in medical research; biobanking; assisted reproductive technologies; and neuroethics.

Required Texts
Books are available for purchase in the Hampshire College Bookstore (in the Airport Lounge). Readings that come from the books will be indicated by (T) for text. Unless otherwise indicated, other course readings are available for download on the course website and/or through direct online link. Online readings will be marked by (O). The syllabus is organized chronologically. You should do the readings in advance of the class for which they are scheduled.

NB: You should always bring hard copies of readings to class (i.e. books and/or printed copies of articles), and I expect to see evidence of careful reading and note-taking. If necessary, I will occasionally collect your copies of the readings in order to get a sense of how you’re working through course materials.

Required Texts Epstein, Steven 2007 Inclusion: The Politics of Difference in Medical Research. Chicago: University of Chicago Press. (T)

Fortun, Michael 2008 Promising Genomics: Iceland and DeCODE Genetics in a World of Speculation. Berkeley: University of California Press. (T)

Haraway, Donna J. 2008 When Species Meet. Minneapolis: University of Minnesota Press. (T)

Lock, Margaret M. 2002 Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley: University of California Press. (T)

Petryna, Adriana 2009 When Experiments Travel: Clinical Trials and the Global Search for Human Subjects. Princeton: Princeton University Press. (T)

Syllabus
COURSE SCHEDULE (revised February 15th) This course schedule is subject to change based on the needs of the class. You are responsible for any changes to this syllabus announced during class. Any changes will also be posted on the HampNet Course Website. The online version of the syllabus should be considered the most up-to-date.

Week 1

Wed Jan 27 Introduction to Critical Bioethics

Week 2

Mon Feb 1 Introduction to Critical Bioethics: Key Terms &amp; Concepts

DEADLINE: CRP#1 due at the beginning of class DEADLINE: First class blog due either Mon Feb 1st or Wed Feb 3rd

Fox, Renée C., Judith P. Swazey, et al. 2008 Observing Bioethics. Oxford and New York: Oxford University Press, Chapters 1-2, pp. 21-76 (O)

Turner, Leigh 2009 Anthropological and Sociological Critiques of Bioethics. Journal of Bioethical Inquiry 6(1):83-98. (O)

Wed Feb 3 Introduction to Critical Bioethics: Key Terms &amp; Concepts DEADLINE: First class blog due either Mon Feb 1st or Wed Feb 3rd DEADLINE: Class Contract

Franklin, Sarah, and Celia Roberts 2006a Introduction: Babies by Design? In Born and Made: An Ethnography of Preimplantation Genetic Diagnosis. Pp. 1-24. Princeton, N.J.: Princeton University Press. (O)

— 2006b Studying PGD. In Born and Made: An Ethnography of Preimplantation Genetic Diagnosis. Pp. 75-93. Princeton, N.J.: Princeton University Press. (O)

Zylinska, Joanna 2009 Bioethics: A Critical Introduction. In Bioethics in the Age of New Media. Pp. 1-34. Cambridge, MA: MIT Press. (O)

Form Mapping Bioethics Groups

Week 3

Mon Feb 8 Theoretical and Methodological Commitments DEADLINE: CRP#2 due at the beginning of class

Foucault, Governmentality (O)

Additional Reading (optional) Rose, Nikolas, Pat O'Malley, et al. 2006 Governmentality. Annual Review of Law and Social Science 2(1):83-104. (O)

Wed Feb 10 (NO) SNOW DAY! Readings rescheduled for Feb 22nd

Week 4

Mon Feb 15 Human Subjects and Informed Consent DEADLINE: CRP#3 due at the beginning of class

Epstein, Inclusion, Introduction and Chapters 1-2, pp. 1-52(T)

Final Report of the Tuskegee Syphilis Study Legacy Committee1—May 20, 1996 http://www.hsl.virginia.edu/historical/medical_history/bad_blood/report.cfm

Reverby, “Bioethics, History, and the Study as Gospel,” pp. 187-203 (O)

Case Study: Tuskegee

Wed Feb 17  Advising Day—no classes

Mapping Bioethics Group Meetings with Professor Hamilton (Schedule TBD)

Week 5

Mon Feb 22 Theoretical and Methodological Commitments

Appadurai, The Social Life of Things (Excerpts) (O)

Brodwin, Paul 2005 "Bioethics in Action" and Human Population Genetics Research. Culture, Medicine and Psychiatry 29(2):145-178. (O)

Daston, Lorraine 2000 The Coming into Being of Scientific Objects. In Biographies of Scientific Objects. L. Daston, ed. Pp. 1-14. Chicago and London: University of Chicago Press. (O)

Mapping Bioethics In-Class Group Work

Wed Feb 24 Human Subjects and Informed Consent DEADLINE: CRP#4 due at the beginning of class

Epstein, Inclusion, Chapters 3 and 9, pp. 53-73 and 182-202 (T)

Landecker, Hannah 2000 Immortality, in Vitro: A History of the HeLa Cell Line. In Biotechnology and Culture: Bodies, Anxieties, Ethics. P. E. Brodwin, ed. Pp. 53-72. Bloomington and Indianapolis: Indiana University Press. (O)

Case Study: Henrietta Lacks/HeLa Film: Cancer Cell Research: The Way of All Flesh

Week 6

Mon Mar 1 Human Subjects and Informed Consent DEADLINE: CRP#5 due at the beginning of class

Epstein, Inclusion, Chapters 10-12 and Conclusion, pp. 203-302 (T)

Case Study: Moore v. Regents of California (O) [read the decision and be prepared to discuss]

Wed Mar 3 Human Subjects and Informed Consent DEADLINE: Student Self-Evaluations due on the Hub DEADLINE: Mapping Bioethics diagram including key issues and questions

Petryna, When Experiments Travel, Introduction and Chapter 1, pp. 1-46 (T)

Sunder Rajan, “Experimental Values,” pp. 67-88 (O)

Week 7

Mon Mar 8 Human Subjects and Informed Consent DEADLINE: CRP#6 due at the beginning of class

Petryna, When Experiments Travel, Chapters 2-3, pp. 47-138 (T)

Wed Mar 10 Bioethical Economies: Medical Tourism DEADLINE: Final Project Research Question due at the beginning of class

Cohen, Lawrence 2005 Operability, Bioavailability, and Exception. In Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. A. Ong and S. J. Collier, eds. Pp. 79-90. Malden, MA: Blackwell Publishing. (O)

Petryna, When Experiments Travel, Chapters 4-5, pp. 139-199 (T)

Video: Wombs for Rent, The Oprah Winfrey Show (first aired November 2007)

Week 8

Mon Mar 15 and Wed Mar 17

Spring Break!!

Week 9

Mon Mar 22 Bioethical Economies: Gendered Trade in Biological Materials

Almeling, Rene 2007 Selling Genes, Selling Gender: Egg Agencies, Sperm Banks, and the Medical Market in Genetic Material. American sociological review 72(3):319-340. (O)

Franklin, Sarah 2006 Embryonic Economies: The Double Reproductive Value of Stem Cells. BioSocieties 1(01):71-90. (O)

Spar, Debora 2007 The Egg Trade -- Making Sense of the Market for Human Oocytes. N Engl J Med 356(13):1289-1291. (O)

Wed Mar 24 Bioethical Economies: Organ Transplantation DEADLINE: Mapping Bioethics Ethnographic Mapping Exercise due at the beginning of class

Lock, Twice Dead, Preamble and Chapter 1, pp. 1-56; Chapters 2-3, pp. 57-100 (T)

Week 10

Mon Mar 29 Bioethical Economies: Organ Transplantation DEADLINE: Final Project Annotated Bibliography Rough Draft due at the beginning of class

Lock, Twice Dead, Chapters 5-7, 130-189 (T)

Wed Mar 31 Bioethical Economies: Organ Transplantation DEADLINE: Mapping Bioethics Interim Report and Annotated Bibliography due at the beginning of class [automatic extension until Fri Apr 2nd at noon]

Lock, Twice Dead, Chapters 13, 14, and “Reflections,” pp. 315-377 (T)

Thu Apr 1  ADVISING DAY

Week 11

Mon Apr 5 Mapping Bioethics Research Period Course period to work with group on Mapping Bioethics Assignment. You may use laptops during this session.

Wed Apr 7 Final Project Research Proposal Peer Review DEADLINE: Final Project Research Proposal Rough Draft

This class is a collaborative effort, and your responsibility is to each other. In order for peer review to work and for all of you to get the most out of the process, you must come to class ready to participate. If you do not come to class on time and prepared with a printed copy of your research proposal, you will a) face my wrath; and, b) be given an additional assignment to complete by Monday. And, no, I cannot print something for you.

Week 12

Mon Apr 12 Issues in Genomics: Race and Indigeneity in Genomics

Marks, Jonathan 2005 Your Body, My Property: The Problem of Colonial Genetics in a Postcolonial World. In Embedding Ethics. L. Meskell and P. Pels, eds. Pp. 29-45. New York: Berg. (O)

Reardon, Race to the Finish, Introduction and Chapter 5, pp. 1-16 and pp. 98-125 (O)

Hamilton, Jennifer A. 2008 Of Caucasoids and Kin: Kennewick Man, Race, and Genetic Indigeneity in Bonnichsen v. United States. In Indigeneity in the Courtroom: Law, Culture, and the Production of Difference in North American Courts. New York: Routledge. (O)

National Genographic Project https://www3.nationalgeographic.com/genographic/

Wed Apr 14 Issues in Genomics: Genetic Risk

Novas, C., and N. Rose 2000 Genetic Risk and the Birth of the Somatic Individual. Economy and society 29 (Part 4):485-513. (O)

Harmon, Facing Life with a Lethal Gene, NY Times, http://www.nytimes.com/2007/03/18/health/18huntington.html

Week 13

Mon Apr 19 Bioethics and the (Non)Human

Haraway, When Species Meet, Chapters 1, 3, 5, pp. 3-44, 69-94, 133-160 (T)

Wed Apr 21 Revisiting Informed Consent

Fortun, Promising Genomics, pp. 1-69 (T) Haraway, When Species Meet, Chapter 2, pp. 45-67 (T)

Week 14

Mon Apr 26 Promising Genomics Fortun, Promising Genomics, pp. 70-158 (T)

Case Study: deCODE Genetics http://www.decode.com/

Wed Apr 28 Promising Genomics

Fortun, Promising Genomics, pp. 159-292

Saturday May 1st Mike Fortun will be keynote speaker at the Five College Undergraduate Anthropology Conference

Week 15

Mon May 3 Mapping Bioethics Presentations

All groups should be prepared to present today. We will get through as many presentations as possible and any remaining groups will go on Wed May 5th.

DEADLINE: Mapping Bioethics Final Reports/Annotated Bibliographies due

Wed May 5 Conclusion: Critical Bioethics Mapping Bioethics Presentations if necessary

DEADLINE: Final Research Proposal due [automatic extension until Friday May 7th at noon]

Friday May 7th

DEADLINE: PORTFOLIOS DUE BY NOON OUTSIDE MY OFFICE (FPH G-6) OR IN THE SS OFFICE

Course Goals
1) To introduce students to the following substantive areas: bioethics; cultural/medical anthropology; social studies of science; and legal studies. 2) To introduce students to qualitative ethnographic methods and social scientific research methods. 3) To help students to build and improve skills in critical reading and writing. 4) To challenge students to develop new perspectives and to expand their skills of critical thinking. 5) To enable students to design and implement independent project-based work.

Course Requirements and Expectations
This class is comprised of challenging subject matter and is designed to be discussion-based and cumulative. You are encouraged to be an active participant and listener in class; thus, attendance and preparation are necessary and mandatory. You are expected to complete all readings promptly and to come to class on time with questions and comments. You are also expected to take notes during lectures and discussions.

This is a writing-intensive course. All assignments must be completed promptly and thoroughly in order to receive a final evaluation for the course. Unless otherwise indicated, all assignments are due at the beginning of class. Late assignments will be noted on a student’s evaluation and/or will be reflected in a student’s grade. Consistently late assignments will result in the student being asked to withdraw from the course. More than one unexcused absence throughout the term will result in a “no evaluation.” More than three absences for any reason will result in a “no evaluation.” This includes classes missed during the drop/add period.

If you miss class for any reason, you are responsible for making up any readings/assignments/notes from that day. You should consult the course websites and your peers for work you’ve missed.

Films are an integral part of course materials and may only be viewed in class. Assignments will often be started and worked on during class time so that you can benefit from interactive engagement with me and with your peers.

If you are struggling with course materials or are experiencing other difficulties that interfere with course work, please get in touch with me immediately. I can’t help you if I don’t know there’s a problem.

Other Stuff Please turn off all cell phones, Blackberries, pagers, and other distracting, ringing, singing, texting, non-course-related machines.

Laptops are allowed in class for presentations or for designated in-class research only. You should be fully engaged during class lectures and discussions, and laptops are a serious distraction to the user and those around him or her. I will allow exceptions to this rule only in cases of a documented learning difference or other extenuating circumstances. If you require permission to use a laptop during class, please consult with me privately within the first two course periods. If you are granted permission, you are expected to use the laptop for course purposes only. Any abuse of laptop use during class time will result in a revocation of privileges regardless of accommodations.

Course Evaluation
Evaluation Criteria Final evaluations will focus on the following areas: • effort, especially willingness to challenge oneself • commitment to working well with one’s peers and being full participant in a collective learning environment • attendance, preparation, and participation • skills development especially in critical reading and writing • quality of written work and attention to detail • individual improvement throughout the semester

Assignments
Critical Reaction Papers (CRPs) In order to help you organize your readings and improve your writing skills as well as to encourage thoughtful class discussion, you will write short critical reaction papers throughout the course. Based on the assigned readings, these papers should be between one and two pages in length (250-500 words). They should briefly summarize the reading, and contain your critical, analytical reaction to the author’s main argument(s).

More information about the assignment will be distributed in class and posted on the course sites. You are expected to hand in six critical reaction papers during the first part of the course. See deadlines below and on the course schedule. Some of the course readings are not appropriate for CRPs (i.e. too short, journalistic, etc); these will be noted on the syllabus. If you write a CRP for one of these readings, you will have to redo it.

CRP #1: on or before Feb 1st CRP #2: on or before Feb 8th CRP #3: on or before Feb 15th CRP #4: on or before Feb 22nd CRP #5: on or before Mar 1st CRP #6: on or before Mar 8th

NB: Some of you may already have extensive experience with this kind of writing and are already old hats at CRPs. Once you’ve demonstrated mastery over this assignment, there will be optional assignments available to move your writing to the next level. Mapping Bioethics For this semester-long assignment, we will break into groups of four or five. Your task here is to map the “terrain” of bioethics through examination of a particular bioethical issue (e.g., stem cells, neuroethics, assisted reproductive technologies, organ transplantation, non-human animal rights, etc). With your group, you will research the major issues and findings in your area as well as explore how different disciplines (e.g., science, anthropology, bioethics, etc.) understand and approach this issue. You will prepare a report and an annotated bibliography of your findings. At the end of the semester, each group will give a presentation (15 minutes, 10 minutes for discussion) summarizing and contextualizing their findings. There will be various deadlines and “signposts” throughout the semester so you can track your progress; these will be listed on the assignment sheet. More details about the content and format of the assignment forthcoming. Groups will be determined the second week of class.

Final Project: Ethnographic Research Proposals For the final project, you will formulate a research question related to the themes and methods of the course and detail a proposal about how you might investigate that question. Your proposal will include an abstract, a literature review, methods section, and a (properly cited) annotated bibliography. You may work individually or in pairs. More details about the content and format of the research proposals forthcoming.

Research Question: Mar 10th Annotated Bibliography Rough Draft: Mar 29th Research Proposal Rough Draft: Apr 7th (peer review day) Research Proposal Final Draft: May 5th

Class Blog

The class blog is intended as a place for you to work through some of the questions and ideas you have from course readings; it is also a place to start and continue conversations outside of class and to connect with your peers. Once a week, you are to do one of the following:

Post a thoughtful, well-formulated question that could be used as a point of departure for discussion. You should post these questions on the class blog by 10 pm the evening before class so that I and the teaching assistants will have a chance to review them. I am looking for evidence of careful reading and thoughtful engagement. It is perfectly fine if some of the material is challenging for you. Ask the question for which you'd like to have further explication or which you would like to discuss further with your peers.

OR

In order to help you think through course readings and to encourage class discussion, you can contribute to an electronic “journal” throughout the semester where you post media artifacts (newspaper and magazine articles, legal documents, internet sites, film and television clips, etc) and reflect on their relevance to course materials. You are required to write a paragraph about the artifact’s relationship to course readings for that day.

In addition to posting on the blog, please keep an electronic file of all your postings so that you can include them in your portfolio at the end of the semester. You should have at least 14 weekly blog postings for your portfolio.

Additionally, you should read the blog on a regular basis and you are also encouraged to respond to the posts of your peers.

Course Policies
Students with Disabilities Any student with a documented disability needing academic adjustments or accommodations is requested to speak with me by our second class period. All discussions will remain confidential. Students should also contact Joel Dansky, Hampshire’s Disabilities Services Coordinator. He may be reached at 413-559-5423 or via email jdansky@hampshire.edu. For more information, please see the Disabilities Services webpage: http://www.hampshire.edu/casa/9138.htm

Ethics of Scholarship Hampshire College is part of a broader community of scholars, a community where ideas, hypotheses, new concepts, and carefully established facts are the currency. None of us, faculty or students, is able to survive without borrowing from the work of others. Just as we expect to have our work recognized in examination reports; reappointments and promotions; or the footnotes of those who borrow from us, so must we carefully recognize those from whom we borrow.

Incompletes Incompletes will be given at my discretion only in cases of documented emergency or special circumstance late in the semester, provided that you have been making satisfactory progress in the course.

Recommended Resources
American Journal of Public Health

Bioethics (Journal of the International Association of Bioethics)

Biosocieties (an interdisciplinary journal for the social studies of life sciences)

Journal of Bioethical Inquiry (an interdisciplinary forum for ethical and legal debate)

Nature

New Genetics and Society

Public Understanding of Science

Science

Science as Culture

Social Studies of Science

Journals available through Project Muse (login and password required)

American Journal of Bioethics Vol. 1 (2001) - vol. 4, no. 2 (2004) only Bulletin of the History of Medicine Hastings Center Report

International Journal of Feminist Approaches to Bioethics Kennedy Institute of Ethics Perspectives in Biology and Medicine

Useful Websites
Bioethics.net: The American Journal of Bioethics

Biopolitical Times: The Weblog of the Center for Genetics and Society, offering commentary and news on human biotechnologies

BioPolicyWiki: an on-line guide to laws and policies governing the use of human genetic and reproductive technologies throughout the world

Genomics Law Report: News and analysis from the intersection of genomics, personalized medicine and the law

Bioethics.com: your global information source on bioethics news and issues

PubMed

National Reference Center for Bioethics Literature