Who Should and Should not Inhabit the World?

1
Who Should and Should not Inhabit the
World? Disability Studies and Reproductive
Technologies, Bioethics and Selective Abortion

• Sherrie Brown
• LSJ 332
• May 18, 2010

2
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.

3
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

4
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?

5
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 

6
Reproductive Technologies/Abortion

• Some say these are tools to eliminate births of
  disabled childrene.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?

7
Pre-natal Testing

• Medicine/Science view these technologies as tools
  for parents to make decisions about their
  futureinformed 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 cleare.g., spina
  bifida, Down syndrome
• Health of mother and fetusrisky procedures
• Economic inequities

8
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 motherfor whatever
  reasonsand she would abort regardless of what
  any prenatal testing showedin fact, she wouldnt
  do the testing?
• Choosing, after prenatal testing, to abort
  because fetus has Down syndromei.e., selective
  abortion?
• Woman chooses abortion because fetus carries gene
  for Tay Sachs?
• Woman chooses to harvest certain eggs because
  of their sex?

9
Small Groups Discussion

• What are the justifications for supporting
  prenatal testing followed by selective abortion
  for congenital disability?
• And, what is the Disability Rights Communitys
  criticism of prenatal testing?
• Please comment on the following two statements
  (taken from Marsha Saxtons 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 societys
  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.

10
Finallyplease consider these

• What do you see as the social consequences of
  reproductive Technologies? Positive, negative?
• Implications for society as whole, disabled
  individuals specifically?