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GENETICS:
Intervention, Control and Research
The HUMAN Genome Project: mapping, identifying and sequencing all human
genes
Expand Knowledge and Use the knowledge for therapy
Social Context:
Genetic Testing and Screening
Knowledge is incomplete, indications of susceptibility
Possibility for Discrimination: Employment, insurance, social avoidance/stigma
Social Issues
Screening children for defects, for risks, for liabilities Who decides? Who
informs?
Case Presentations:
Gene Therapy: ADA, Parkinson's, Sickle-Cell, Malignant Melanoma, Leukemia, Cystic Fibrosis
, etc...
Germ-Line Therapy: to eliminate heritable diseases from a family
Human Stem Cells: for repair or replacement. Grow tissues, organs, nerves
Huntington's Disease: Testing? Moral and social issues
Genetic Intervention:
gene defects, developmental defects, genetic carriers, genetic predisposition
Screening: pku, Sickle-Cell
Counseling
Prenatal Genetic Diagnosis: amniocentesis, chorionic villus sample CVS, selective abortion
DIFFICULTIES
1. Is there a right to have children who are likely to be impaired/
2. Is society justified in requiring that people submit to genetic screening, counseling
and prenatal diagnosis?
3. Do physicians have an obligation to inform their patients who are prospective
parents about the kinds of genetic tests that are available?
4. Do patients have the right to be informed of all the results of a genetic test?
5. Should public funds be used to pay for genetic tests when an individual is unable to
pay?
Eugenics:

negative- to avoid undesirable traits or conditions

positive - to promote traits and conditions that are valued
DIFFICULTIES
Genetic Research

Therapy: recombinant DNA, germ-line therapy

Technology

Bio Hazards
DIFFICULTIES
risks of new forms of life
ETHICAL TRADITIONS:
Utilitarian ; concern for consequences
Kantian: autonomy, honesty
Ross: prima facie duties
Rawlsian: maxi min principles
Natural Law: promote life
ARTICLES:
Ruth Hubbard and R. C. Lewontin: PITFALLS of GENETIC TESTING
Test for conditions: treatable, non treatable, unpreventable
Robert Wachbroit: DISOWNING KNOWLEDGE: Issue in Genetic Testing
Against Paternalism:
Do Physicians have a duty or a right to inform people of the test results?
Do people have a responsibility to learn of their condition?
Dena Davis: GENETIC DILEMMAS the Child's Right to an Open Future
Must counselors assist couple to have a defective child?
Laura Purdy: GENETICS and REPRODUCTIVE RISK: Can Having Children be Immoral?
1. there exists a duty to provide all children with a normal opportunity for a good
life.
2. we don't harm possible children by not letting them exist
3. the duty to provide for (1) takes precedence over parent's right to reproduce
Therefore, use prenatal screening and abortion or do not conceive
Leon Kass: IMPLICATIONS of PRENATAL DIAGNOSIS for the Human Right to Life

What criteria for abortion?

What is "unfit" to live?
Ronald Munson and Lawrence Davis: Germ-Lime Therapy and the MEDICAL IMPERATIVE
There exists the imperative to promote health and so there is an obligation to pursue such
therapy
DECISION SCENARIOS:
1. Testing for BRCA1
2.Inform or Not? Alzheimer's Risk
3. Prenatal Diagnosis to Avoid a Dwarf being born
4. Genetic Screening for "Compatibility"
5. Prenatal screening: Result Tay-Sachs
6.Positive Eugenics Laws, incentives
7. Gene Splicing to eliminate blindness
8. Employment related Genetic Screening