2. Genetic Choices Questions from the text (p460): Should genetic testing be done even when no treatment is available? Do carriers of deadly, inheritable disease have a duty to warn their children? Is it “playing God” to alter genes to treat diseases or keep them from affecting future generations? Is it wrong to use preconception genetic testing and embryo selection to avoid disabled children? Is such discriminatory against the disabled? Is choosing eye color, gender, musical v. athletic ability, etc., wrong? Is eugenics wrong (trying to make society free of genetic disease)? 2

3. Genes and Genomes Read p460-461 … Vaughn’s discussion of the science of genetics in “Genes and Genomes” Is the whole discussion ideologically confused? “Genes have their say, but not necessarily the final say, on how a person turns out, for he or she is also affected by the incredibly complex interactions between genetic systems and environmental factors” What else plays a role in “how a person turns out”? 3

4. Genes and Genomes More opportunity for confusion: There is a long discussion of “errors” in the human genome, p461, right hand column:  “flaws in the system”  “Mistakes (mutations or alterations)”  “genetic errors”  “4,000 hereditary diseases”  “relation between genetic flaws and genetic disease … anything but simple” What ideological commitments, opposite of the earlier ideological commitment, present in this language will affect how we view the rightness or wrongness of genetic choices? 4

5. Types of Genetic Testing Newborn Screening  every state mandates some genetic testing for newborns  first mandatory genetic test (some states screen for 30 disorders) was for phenylketonuria (PKU), which causes severe retardation when not treated early with special diet Carrier Testing  not mandated  autosomal dominant disorders (just one parent can pass the disorder to offspring) … Huntington’s is an autosomal dominant disorder  autosomal recessive disorders (both parents must carry the disorder to pass it to offspring) … Cystic Fibrosis is an autosomal recessive disorder 5

6. Types of Genetic Testing Predictive testing  will you develop a genetic disease later in life?  some genetic tests are guarantees of disease (Huntington’s disease, which means early dementia and physical deterioration, then death)  some are simply likelihood (Venous Thrombosis … a blood-clotting disorder) Diagnostic testing  to determine if someone with symptoms has a genetic disorder 6

7. Types of Genetic Testing Prenatal testing (testing for the health of a fetus) Common prenatal testing methods: 1. amniocentesis 2. chorionic villus sampling (testing of placental cells)  Downs Syndrome  Sickle Cell Anemia  Tay-Sachs disease  General developmental disorders, blindness, deafness, etc. Preimplantation genetic diagnosis (PGD)  testing embryos produced through IVF before they are implanted (or before they become embryos, per the definition from Abortion chapter, p255) 7

8. Personal Knowledge When, if ever, should someone feel obliged to do a genetic test for themselves?  Huntington’s causes death in middle age (40s-50)  Would you want to know if you had it? Vaughn uses the case of Maria to illustrate how things change when others are involved:  Maria has Wilson’s disease  Wilsons causes liver dysfunction and serious psychiatric problems  Effective treatment works if caught before symptoms appear  Maria is ashamed of her psychiatric symptoms and doesn’t want to tell her siblings  Her siblings, however, have a 25% chance of having Wilson’s themselves What should Maria do?  Autonomy says that Maria’s wish for privacy should be respected  But she seems to have a duty to warn her siblings Confusingly, Vaughn casts the question as one of competing duties. Read it, column 1, p465 8

9. Paternalism, Autonomy, and Confidentiality Maria’s case takes on a new dimension when a healthcare provider enters the equation  If Maria insists on confidentiality, what would you do?  What is a Tarasoff duty again? Vaughn claims that “law has been equivocal,” p465, top Most ethicists endorse a principle of proportionality, or proportionate reasons:  As harm increases in severity and likelihood, confidentiality’s value decreases The major conflicting concern here is harm to the healthcare profession; providers do not want patients to avoid health knowledge for fear of having it exposed 9

10. Paternalism, Autonomy, and Confidentiality Autonomy v. Paternalism issues arise when testing accidently reveals a genetic disorder that is unpreventable, untreatable Should a physician tell a patient of the discovery that Alzheimer's is in their future? What considerations can you think of in favor of Paternalism? What of Autonomy? 10

11. Paternalism, Autonomy, and Confidentiality The more genetic information is available, the more opportunity there is for employers and insurance providers to learn of it and discriminate against those with genetic disorders Is there a general duty of physicians to make genetic information hard to acquire? 11

12. Reproductive Decisions The problem of potentiality reappears: Is it wrong to prevent a genetic disease by preventing the existence of the person who will have it? Dan Brock (top of p467), argues that it would not be better for the person with the handicap to have it prevented since that can only be done by preventing him from ever having existed at all This is called the ‘incoherence argument’ against genetic testing used to keep those with genetic diseases from coming to be Specifically the incoherence seems to be the idea of benefitting someone by preventing their existence 12

13. Reproductive Decisions The natural response to the incoherence argument would be, we can suppose, the ‘incoherence of the incoherence argument’: Potential people don’t exist to be deprived of anything Does that work? 13

14. Reproductive Decisions Discrimination against the disabled Would genetic testing to prevent birth defects be morally similar to Nazi- like efforts to “eradicate whole races of people”? Is it inherently disrespectful to disabled people to wish for a world where there aren’t any such people? If you think it is right to eliminate birth defects and genetic diseases, what do you say to this argument? 14

15. Gene Therapy and Stem Cell Research Read about Gene Therapy (p468) and Stem Cell Research (p471) on your own Look at the Applying Major Theories discussion (p474) Look at the Case Studies … they’re interesting Do you accept the distinction between repairing problems (okay), and enhancing individuals (not okay)? Why? 15