Paper Topics (Paper #1)

1. PAS/VAE 8 Abortion 3 Female genital “mutilation” 2 Drugs for behavioral disorders in children Managed care & patient advocacy Cloning- organ farms Parental responsibility Determining death Animal experimentation Conjoined twins Religious refusal Terminal sedation Care of neonates Genetics Stem cell research Advance directives Paper Topics (Paper #1)

2. Genetic Screening

3. Human Genome Project • Goal: Map the entire human genome • Limits • Map = static • Genome = dynamic; constantly interacting with other parts of itself and with the chemical environment • How many humans have to be sampled to arrive at the human genome?

4. Genetic Determinism • Idea that genes mostly or completely determine who we are and how we behave • Best scientific evidence: complex continuous interaction between genes and environment • Less an explicit position than a trap one falls into when not thinking carefully

5. Problem with Genome • Early ability to screen for genetic defects or risk factors • Much later ability to intervene to fix those factors (if ever) • How good is a screening test with which no treatment is associated?

6. A Brief Catalog of Ethical Concerns

7. Privacy • Conceal genetic info from: • Employers? • Insurance companies? • Other members of family? • Would knowing prenatal risk lead to inevitable social coercion to prevent birth of “expensive” babies? (or demand that individual pay for care?)

8. Safety • Genetic technology may be experimental and relatively untested • When is it acceptable to attempt first human application? • Ethical to experiment on future child without its consent?

9. Justice • Genetic screening and technologies likely to be very costly • Either would add greatly to costs of health care in US… • Or would worsen two-tier system leaving “lower class” without access • Example: Drug to raise IQ by 20 points

10. Eco-Ethics • Ecological risks of “messing around” with genetic material and genetic diversity • Probably mostly applies to agricultural uses which are currently little regulated • How rational is European distrust of genetically engineered food products? • Is genetic engineering really different from selective breeding?

11. Somatic vs. Germ Cells • Somatic manipulation: affects only one individual • Germ line manipulation: in theory affects a complete family tree indefinitely into future • Germ line therapy seems more intrusive and invasive re: the human gene pool (but is a “better fix”)

12. Commercialization • Patenting of genes and gene products • Granting exclusive licenses for genetic tests and methods

13. Patenting Genes? • Sounds ridiculous • Probably not a great threat • Patenting gives one exclusionary rights (not any positive rights) • Patenting assures public access to information • Cannot patent your gene or your genome

14. Exclusive Licenses • May be a bigger threat • Replaces scientific exchange with industrial secrecy • Conflict of interest for scientists and universities • Makes it difficult for practitioner to trust information from journals, etc. (informed consent)

15. Licenses: Example • Brca1 gene: 86% risk of breast cancer if a relative has disease • Based on this test, some women had preventive mastectomies • Now thought to be only 40% predictive • Did new information get out fast enough, given company’s financial interest?

16. Eugenics • Negative eugenics: Prevent or treat genetic diseases • Positive eugenics: Improve or enhance function of future generations

17. Eugenics (cont.) • Usually argue negative eugenics is defensible, positive is not (due to who gets to define “enhancement”) • Recent criticisms: There may be no hard and fast line between remedying a defect and “enhancement”

18. Treatment vs. Enhancement Therapy Enhancement 0

19. Child’s Right to an Open Future • In favor: • Protects child’s exercise of developing autonomy • Prevents parents from exploiting their children in the name of their own interests or those of the group

20. Child’s Right to an Open Future • Opposed: • Idealizes a picture of a child as a future chooser • At some time of full maturity, looks around among communities and makes a free choice as to where to live • Is this a coherent, meaningful picture of a child?

21. Child’s Right to an Open Future-- Opposed • All “parenting” is an exercise in limiting a child’s future • Doing one thing always means you did not do something else (opportunity costs) • Doing something else would have provided child with some additional future choice • Cannot teach values, beliefs, moral rules without limiting child’s future in some way

22. Child’s Right to an Open Future-- Opposed • Being a child means not getting to choose • Who your parents are • What is your community of origin • Your family’s religious or philosophical allegiances • Future choices cannot undo your “roots”

23. Against Exploiting Children • All good parenting means closing off some futures • One way parents can exploit their children is to close off futures • No easy formula to distinguish good and bad parenting • Hence cases like Old Order Amish & schools are tough cases

24. Genetics in its place • Nazi Germany proved that if you want to do evil in the name of positive eugenics, you don’t need newest genetic technologies • McGee: If you want to really mess up your kids you don’t need gene therapy to do it • Genetics not a special ethical category

25. Disabilities perspectives • J. Andre: Much of ethical thinking and moral development is “learning to see” • Typically we are blind to the many ways our society disadvantages and discriminates against persons with disabilities • Ethical thinking, at least, should not promote more blindness