Paper Topics (Paper #1)Genetic ScreeningHuman Genome ProjectGenetic DeterminismProblem with GenomeA Brief Catalog of Ethical ConcernsPrivacySafetyJusticeEco-EthicsSomatic vs. Germ CellsCommercializationPatenting Genes?Exclusive LicensesLicenses: ExampleEugenicsEugenics (cont.)Treatment vs. EnhancementChild’s Right to an Open FutureSlide 20Child’s Right to an Open Future-- OpposedSlide 22Against Exploiting ChildrenGenetics in its placeDisabilities perspectivesPaper 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 directivesGenetic ScreeningHuman 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?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 carefullyProblem 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 ConcernsPrivacy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 pointsEco-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 methodsPatenting 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 genomeExclusive 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)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?EugenicsNegative eugenics: Prevent or treat genetic diseasesPositive eugenics: Improve or enhance function of future generationsEugenics (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. Enhancement0Thera py Enhan cementChild’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 groupChild’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-- 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 wayChild’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”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 casesGenetics 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 categoryDisabilities 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