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Anger and Forgiveness"Are You There Alone?"10 Good Questions about Life and DeathA Casebook of Ethical Challenges in NeuropsychologyA Companion to BioethicsA Companion to BioethicsA Companion to GenethicsA Companion to GenethicsA Companion to Muslim EthicsA Cooperative SpeciesA Critique of the Moral Defense of VegetarianismA Delicate BalanceA Fragile LifeA Life for a LifeA Life-Centered Approach to BioethicsA Matter of SecurityA Mirror Is for ReflectionA Natural History of Human MoralityA Philosophical DiseaseA Practical Guide to Clinical Ethics ConsultingA Question of TrustA Sentimentalist Theory of the MindA Short Stay in SwitzerlandA Tapestry of ValuesA Very Bad WizardA World Without ValuesAction and ResponsibilityAction Theory, Rationality and CompulsionActs of ConscienceAddiction and ResponsibilityAddiction NeuroethicsAdvance Directives in Mental HealthAfter HarmAftermathAgainst AutonomyAgainst BioethicsAgainst HealthAgainst MarriageAgainst Moral ResponsibilityAgency and 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CinemaEthics at the End of LifeEthics Case Book of the American Psychoanalytic AssociationEthics Done RightEthics ExpertiseEthics for EveryoneEthics for PsychologistsEthics for the New MillenniumEthics in CyberspaceEthics in Health CareEthics In Health Services ManagementEthics in Mental Health ResearchEthics in PracticeEthics in PsychiatryEthics in PsychologyEthics in Psychotherapy and CounselingEthics of PsychiatryEthics without OntologyEthics, Culture, and PsychiatryEthics, Sexual Orientation, and Choices about ChildrenEvaluating the Science and Ethics of Research on HumansEvilEvil GenesEvil in Modern ThoughtEvil in Modern ThoughtEvolution, Gender, and RapeEvolutionary Ethics and Contemporary BiologyEvolutionary Psychology and ViolenceEvolved MoralityExperiments in EthicsExploding the Gene MythExploiting ChildhoodFacing Human SufferingFact and ValueFacts and ValuesFaking ItFalse-Memory Creation in Children and AdultsFat ShameFatal FreedomFellow-Feeling and the Moral LifeFeminism and 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FeminismHabilitation, Health, and AgencyHandbook for Health Care Ethics CommitteesHandbook of BioethicsHandbook of Children's RightsHandbook of PsychopathyHappinessHappiness and the Good LifeHappiness Is OverratedHard FeelingsHard LuckHardwired BehaviorHarmful ThoughtsHeal & ForgiveHealing PsychiatryHealth Care Ethics for PsychologistsHeterosyncraciesHistorical and Philosophical Perspectives on Biomedical EthicsHoly WarHookedHookedHow Can I Be Trusted?How Propaganda WorksHow to Do Things with Pornography How to Make Opportunity EqualHow Universities Can Help Create a Wiser WorldHow We HopeHow We Think About DementiaHuman BondingHuman Dignity and Assisted DeathHuman EnhancementHuman GoodnessHuman Identity and BioethicsHuman TrialsHumanism, What's That?Humanitarian ReasonHumanityHumanizing MadnessI am Not Sick I Don't Need Help!I Was WrongIdentifying Hyperactive ChildrenIf That Ever Happens to MeImproving Nature?In Defense of FloggingIn Defense of SinIn Love With LifeIn Our Own ImageIn 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MadNeoconservatismNeonatal BioethicsNeurobiology and the Development of Human MoralityNeuroethicsNeuroethicsNeuroethicsNew Takes in Film-PhilosophyNew Waves in EthicsNew Waves in MetaethicsNietzsche on Ethics and PoliticsNo Child Left DifferentNo Impact ManNormative EthicsNormativityNothing about us, without us!Oath BetrayedOf War and LawOn ApologyOn Being AuthenticOn EvilOn Human RightsOn The Stigma Of Mental IllnessOn the TakeOn Virtue EthicsOn What MattersOn What We Owe to Each OtherOne ChildOne Nation Under TherapyOne World NowOne World NowOur Bodies, Whose Property?Our Bodies, Whose Property?Our Daily MedsOur Faithfulness to the PastOur Posthuman FutureOut of EdenOut of Its MindOut of the ShadowsOverdosed AmericaOxford Handbook of Psychiatric EthicsOxford Studies in Normative EthicsOxford Textbook of Philosophy of PsychiatryPassionate DeliberationPatient Autonomy and the Ethics of ResponsibilityPC, M.D.Perfecting VirtuePersonal AutonomyPersonal Autonomy in SocietyPersonal Identity and EthicsPersonalities on the PlatePersonhood and Health CarePersons, Humanity, and the Definition of DeathPerspectives On Health And Human RightsPharmaceutical FreedomPharmacracyPharmageddonPhilosophy and This Actual WorldPhilosophy of BiologyPhilosophy of Technology: The Technological ConditionPhysician-Assisted DyingPicturing DisabilityPilgrim at Tinker CreekPlaying God?Playing God?Political EmotionsPornlandPowerful MedicinesPractical Autonomy and BioethicsPractical EthicsPractical Ethics for PsychologistsPractical RulesPragmatic BioethicsPragmatic BioethicsPragmatic NeuroethicsPraise and BlamePreferences and Well-BeingPrimates and PhilosophersPro-Life, Pro-ChoiceProcreation and ParenthoodProfits Before People?Progress in BioethicsProperty in the BodyProzac As a Way of LifeProzac on the CouchPsychiatric Aspects of Justification, Excuse and Mitigation in Anglo-American Criminal Law Psychiatric EthicsPsychiatry and EmpirePsychological Concepts and Biological PsychiatryPsychology and 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Informed Consent in BioethicsRethinking Mental Health and DisorderRethinking RapeReturn to ReasonRevolution in PsychologyRightsRights, Democracy, and Fulfillment in the Era of Identity PoliticsRisk and Luck in Medical EthicsRobert NozickRousseau and the Dilemmas of Modernity Rule of Law, Misrule of MenRun, Spot, RunRunning on RitalinSatisficing and MaximizingSchizophrenia, Culture, and SubjectivityScience and EthicsScience in the Private InterestScience, Policy, and the Value-Free IdealScience, Seeds and CyborgsScratching the Surface of BioethicsSecular Philosophy and the Religious TemperamentSeeing the LightSelf-ConstitutionSelf-Made MadnessSelf-Trust and Reproductive AutonomySentimental RulesSex Fiends, Perverts, and PedophilesSex OffendersSex, Family, and the Culture WarsSexual DevianceSexual EthicsSexual PredatorsSexualized BrainsShaping Our SelvesShock TherapyShould I Medicate My Child?ShunnedSick to Death and Not Going to Take It AnymoreSickoSide EffectsSidewalk StoriesSister CitizenSkeptical FeminismSocial Inclusion of People with Mental IllnessSocial JusticeSociological Perspectives on the New GeneticsSome We Love, Some We Hate, Some We EatSovereign VirtueSpeech MattersSpiral of EntrapmentSplit DecisionsSticks and StonesStories MatterSubhumanSubjectivity and Being SomebodySuffering, Death, and IdentitySuicide ProhibitionSurgery JunkiesSurgically Shaping ChildrenTaking Morality SeriouslyTaming the Troublesome ChildTechnology and the Good Life?TestimonyText and Materials on International Human RightsThe Aims of Higher EducationThe Almost MoonThe Altruistic BrainThe American Psychiatric Publishing Textbook of Forensic PsychiatryThe Animal ManifestoThe Animals' AgendaThe Art of LivingThe Autonomy of MoralityThe Beloved SelfThe Best Things in LifeThe Big FixThe Bioethics ReaderThe Biology and Psychology of Moral AgencyThe Blackwell Guide to Medical EthicsThe Body SilentThe BondThe Book of LifeThe Burden of SympathyThe Cambridge Companion to Virtue EthicsThe 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SightseeingThe Ethics of the FamilyThe Ethics of the Family in SenecaThe Ethics of the LieThe Ethics of TransplantsThe Ethics of WarThe Ethics ToolkitThe Evolution of Mental Health LawThe Evolution of MoralityThe FamilyThe Fat Studies ReaderThe Forgiveness ProjectThe Form of Practical KnowledgeThe Fountain of YouthThe Freedom ParadoxThe Future of Assisted Suicide and EuthanasiaThe Future of Human NatureThe Good BookThe Good LifeThe Great BetrayalThe Handbook of Disability StudiesThe Healing VirtuesThe High Price of MaterialismThe History of Human RightsThe HorizonThe Idea of JusticeThe Ideal of NatureThe Illusion of Freedom and EqualityThe Immortal Life of Henrietta LacksThe Importance of Being UnderstoodThe Insanity OffenseThe Joy of SecularismThe Language PoliceThe Last Normal ChildThe Last UtopiaThe Limits of MedicineThe LobotomistThe Love CureThe Lucifer EffectThe Manual of EpictetusThe Mark of ShameThe Meaning of NiceThe Medicalization of SocietyThe Merck DruggernautThe Mind Has 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Virtues of HappinessThe Virtuous Life in Greek EthicsThe Virtuous PsychiatristThe Voice of Breast Cancer in Medicine and BioethicsThe War Against BoysThe War for Children's MindsThe Whole ChildThe Woman RacketThe Worldwide Practice of TortureTherapy with ChildrenThieves of VirtueThree Generations, No ImbecilesTimes of Triumph, Times of DoubtTolerance Among The VirtuesTolerance and the Ethical LifeTolerationToxic PsychiatryTrauma, Truth and ReconciliationTreatment Kind and FairTrusting on the EdgeTry to RememberUltimate JudgementUnborn in the USA: Inside the War on AbortionUndermining ScienceUnderstanding AbortionUnderstanding CloningUnderstanding EmotionsUnderstanding EvilUnderstanding Kant's EthicsUnderstanding Moral ObligationUnderstanding Physician-Pharmaceutical Industry InteractionsUnderstanding TerrorismUnderstanding the GenomeUnderstanding the Stigma of Mental IllnessUnderstanding Treatment Without ConsentUnhingedUnprincipled VirtueUnsanctifying Human Life: Essays on EthicsUnspeakable Acts, Ordinary PeopleUp in FlamesUpheavals of ThoughtUsers and Abusers of PsychiatryValue-Free Science?Values and Psychiatric DiagnosisValues in ConflictVegetarianismViolence and Mental DisorderVirtue EthicsVirtue, Rules, and JusticeVirtue, Vice, and PersonalityVirtues and Their VicesVoracious Science and Vulnerable AnimalsVulnerability, Autonomy, and Applied EthicsWar Against the WeakWar, Torture and TerrorismWarrior's DishonourWeaknessWelfare and Rational CareWhat Genes Can't DoWhat Have We DoneWhat Is a Human?What Is Good and WhyWhat Is Good and WhyWhat Is the Good Life?What Price Better Health?What Should I Do?What We Owe to Each OtherWhat Would Aristotle Do?What's Good on TVWhat's Normal?What's Wrong with Children's RightsWhat's Wrong with Homosexuality?What's Wrong With Morality?When Is Discrimination Wrong?Who Holds the Moral High Ground?Who Owns YouWho Qualifies for Rights?Whose America?Whose View of Life?Why Animals MatterWhy Animals MatterWhy I Burned My Book and Other Essays on DisabilityWhy Not Kill Them All?Why Punish? How Much?Why Some Things Should Not Be for SaleWisdom, Intuition and EthicsWithout ConscienceWomen and Borderline Personality DisorderWomen and MadnessWondergenesWould You Kill the Fat Man?Wrestling with Behavioral GeneticsWriting About PatientsYou Must Be DreamingYour Genetic DestinyYour Inner FishYouth Offending and Youth Justice Yuck!
Genetic Politics: From Eugenics
to Genome warns that eugenics is no relic of a totalitarian Nazi past but
an "emergent property" of "the century of the gene."
Although the discussion in the first part of the book moves descriptively
"from eugenics to genome," in the remainder of the text, Anne Kerr
and Tom Shakespeare argue that the histories of eugenics and genetics have so
intertwined that current genetic research and clinical practice are not neutral
but serve powerful eugenic ideals.
Fearing the possibility of a final genetic solution to the plight of
disabled people, their response to the 'medicalization of disability' is an
alternate exploration of the construction of genetic disease in the social,
economic, cultural and political contexts.
Using the lens of politics, they conclude that 'the problem of
disability' is less a medical problem than an issue of human rights.
The assumptions of the authors of Genetic
Politics are quite explicit:
"We do not believe that the world would be a better place without
disabled people. Nor do we believe that
disability is a tragedy best avoided" (6). Ann Kerr and Tom Shakespeare challenge those who argue that
genetic impairment is undesirable, unnatural and, therefore, should be
prevented. They believe that such a
neo-eugenic conclusion is the result of "the current tendency to privilege
technical expertise and commercial hype...instead of normative prescriptions
about choice and progress" (186).
Their argument proceeds in two
parts. Although their focus is
primarily on the UK, our authors do weave key developments in the USA and other
European countries into their discussion.
They begin by laying out some of the conceptual history of the eugenics
movement that, they believe, still informs the attitude of many physicians and
other health care workers. They review
the rise of eugenics in the UK and the USA, and then they discuss the
implementation of eugenic ideals in totalitarian Nazi Germany and, later, in
democratic societies such as Denmark, Norway, Sweden, and Finland. Part one ends with a discussion of the co-evolution of eugenics and genetics
during the inter-and post-war periods.
A discussion of recent developments
in genetics provides the background for part two that attempts to connect our
eugenic legacy with current debates about the social implications of the
so-called "new genetics."
Selected examples of 'genohype' (not their term), "genetic
essentialism," or "genetic
determinism" in media and popular discourse, commercial companies and
charities reveal that eugenic ideology still percolates throughout genetic
research and clinical practice. As an example, we are shown how "the
rights of well-resourced and able-bodied health consumers to genetic tests take
precedence over the rights of disabled people to equality" (161)
Kerr and Shakespeare argue that the
medicalization of genetic disease often ignores how value-laden and culturally
specific are our notions of impairment.
Rather than promising medical intervention, the standard medical model,
they profess, conceptualizes the disabled as biologically inferior, as a
"genetic underclass." Thus
our authors help us to better understand why discussions about improving
humanity through genetics, for example, elicit fears in the disabled people's
movement over the possible re-emergence of a eugenic ideal that fosters a
climate of intolerance against disabled people: "the narrative of
improving health is mainly on the basis of removing disabled people from the
As we come to the close of the
book's argument, we must certainly acknowledge that our authors have
successfully uncovered problematic eugenic assumptions underpinning the
possibility of 'making' instead of 'having' children. Shakespeare and Kerr have weakened the apparent strangle hold of
genetic explanations of behavior and disease in our understanding of the
disabled by providing an alternative perspective that reminds us of the social,
economic, cultural, and political factors that help to define disability. As a result, they offer a corrected view of
impairment as less a medical problem than a human rights issue.
In addition to "policy pragmatics"
to reduce the potential for eugenics, the authors call for a rethinking of our
"philosophies of life and choice" which will involve "promoting
an alternative model of care, the social model of disability, as well as a more
contextual understanding of choice, science and technology" (188). Since the over-arching goal is a world that
values diversity and equality, we might expect one final plea for the inclusion
of those who are physically and/or mentally compromised and impaired in our
definition of "normal" for both clinical practice and public
policy. However, our authors conclude
their argument with the rather curious proposal that "[p]eople should be
able to choose to have a disabled child, and resources must be provided to
allow them to do so" (186) [italics added]. Thus, we do not get the expected rethinking of the meaning of
"disabled" in the standard medical model that previously was severely
criticized. Rather than the promised
"alternative ethos for genetics and society" (7), neither disabled
people nor their parents are cast in positive roles as responsible agents,
whose lives have a value equal to anyone's.
Since the claim is that society still has special charitable duties to
the disabled, inequality still lingers in the status quo; discrimination
persists; and people with disabilities remain "genetic
outsiders." In other words,
individuals with genetic disorders are still locked in their
"diseased" role as recipients of benevolence rather than as persons
with equal social and moral standing.
© 2003 Larry D. Hultgren
Larry Hultgren describes himself as
Grinnell College majoring in Philosophy and Religion; Ph.D. Vanderbilt
University in Philosophy. Currently Professor of Philosophy
at Virginia Wesleyan College, Norfolk, VA.
Since I am at a liberal arts college, my teaching runs the gamut of philosophy
offerings. I am especially interested in interdisciplinary pursuits, and I
direct the college's Social Ecology Program and our innovative PORTfolio
Project, which attempts to bring the liberal arts to life for our students by
connecting the classroom with real world experiences. I also serve on the
Bioethics Committee of the Children's Hospital
of the King's Daughters in Norfolk, VA, and serve on the Board of Directors
of the Bioethics Network of Southeast Virginia.
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