Paper Topics (Paper #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

Genetic Screening

Human Genome Project

Goal: Map the entire human genomeLimits

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?

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

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?

A Brief Catalog of Ethical Concerns

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?)

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?

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

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?

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”)

Commercialization

Patenting of genes and gene products

Granting exclusive licenses for genetic tests and methods

Patenting Genes?

Sounds ridiculousProbably 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

Exclusive Licenses

May be a bigger threatReplaces scientific exchange with

industrial secrecyConflict of interest for scientists and

universitiesMakes it difficult for practitioner to

trust information from journals, etc. (informed consent)

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% predictiveDid new information get out fast

enough, given company’s financial interest?

Eugenics

Negative eugenics: Prevent or treat genetic diseases

Positive eugenics: Improve or enhance function of future generations

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”

Treatment vs. Enhancement

0

Therapy Enhancement

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

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?

Child’s Right to an Open Future-- OpposedAll “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

Child’s Right to an Open Future-- OpposedBeing a child means not getting to

choose Who your parents are What is your community of origin Your family’s religious or philosophical

allegiancesFuture choices cannot undo your

“roots”

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

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

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