Who Should and Should not Inhabit the World? Disability Studies and Reproductive Technologies, Bioethics and Selective Abortion Sherrie Brown LSJ 332 May 18, 2010

Topics for Today  Two broad themes in this course Discrimination on basis of disability Perspectives of disabled individuals  Today in context of bioethics, reproductive technologies and prenatal testing/selective abortion.  Reminder that these issues are very personal; the goal of the discussion is expanding perspectives not criticizing or changing your beliefs/values.

General Questions about Disability and Society  What is it about disability that has created the following reactions from the majority nondisabled community? Fear Hostility Pity Others?  And these reactions about resulted in what societal reactions/actions? Elimination Segregation Others?  Ways to think about “who should and should not inhabit the world?”* Disability and eugenics Disability and abortion Disability and bioethics *Hannah Arendt

Bioethics Basics  As a field, developed in reaction to the dominance of the medical/scientific fields.  Interested in ensuring: Informed consent of patients/subjects Implications of research were considered Quality of life as factor in medical decision making  Differences between goals of medicine/bioethics: Bioethics asks, “Should this life be saved?” Medicine asks, “Can this life be saved?”

Bioethics and Disability Studies  Similarities? Both moved from individual decisions of consent/choice to implications of research (social issues); Both arose in reaction to the unbridled power of medicine.  How are they different? Issue of impairment and quality of life. Asch calls this the myth of medicine and bioethics

Reproductive Technologies/Abortion  Some say these are tools to eliminate births of disabled children—e.g., those with Down syndrome, spina bifida, MD, sickle cell, etc.  Women are encouraged/pressured to get pre-natal testing early in pregnancy: Ultrasound Alpha Fetal Protein blood test Amniocentesis Chorionic Villi Screen (amniotic sac)  Question: Why are these tests considered the responsible thing to do? Like stop smoking or drinking during pregnancy?

Pre-natal Testing  Medicine/Science view these technologies as tools for parents to make decisions about their future—informed consent.  Risks involved include: False positives/false negatives Protein level blood test (identify Neural Tube Defects) as example of false positives:  California REQUIRES that all pregnant women be offered this test.  In that state: 200,000 births a year. NTDs occur approximately 1/1,000 so then approximately 200 year born with NTDs a year and 198,800 without. Yet, 5% test positive. Level of impairment not always clear—e.g., spina bifida, Down syndrome Health of mother and fetus—risky procedures Economic inequities

Abortion Decision-Making Process  A woman has a legal right (within limits) to abort a fetus. Constitutional right to choose.  Is there a difference in how you feel about: Choosing to abort because a woman is unable to envision life as a mother—for whatever reasons—and she would abort regardless of what any prenatal testing showed—in fact, she wouldn’t do the testing? Choosing, after prenatal testing, to abort because fetus has Down syndrome—i.e., selective abortion? Woman chooses abortion because fetus carries gene for Tay Sachs? Woman chooses to “harvest” certain eggs because of their sex?

Small Groups Discussion: 1. What are the justifications for supporting prenatal testing followed by selective abortion for congenital disability? 2. And, what is the Disability Rights Community’s criticism of prenatal testing? Please comment on the following two statements (taken from Marsha Saxton’s work) 3.Today, eugenic principles are part of largely unexamined and unspoken preconceptions about who should and who should not inhabit the world. Scientists and physicians provide reproductive technologies to put principles into practice. 4.Women are expected to implement the society’s eugenic prejudices by choosing to have the appropriate tests an electing not to initiate or terminate pregnancy if the science shows those outcomes will offend.

Finally…please consider these  What do you see as the social consequences of reproductive Technologies? Positive, negative?  Implications for society as whole, disabled individuals specifically?