Genetic Discrimination : Transatlantic Perspectives on the Case for a European Level Legal Response

301 Pages·2015·3.536 MB·English

by  Gerard Quinn , Aisling de Paor , Peter Blanck , (eds.)

Genetic Discrimination
As genetic technologies advance, genetic testing may well offer the
prospect of detecting the onset of future disabilities. Some research also
forwardsthatcertainbehaviouralprofilesmayhaveastronggeneticbasis,
suchasthedeterminationtosucceed,orthepropensityforrisk-taking.As
this technology becomes more prevalent, there is a danger that genetic
information may be misused by third parties and that particular genetic
profiles may be discriminated against by employers, by providers of social
goods and services, such as insurance companies and even by educational
facilities.
Thisbookexploresthedifferentformsandpotentialusesofgenetictest-
ing.Drawingtogetherleadingexpertsindisabilitylaw,bioethics,healthlaw
and a range of related fields, it highlights the ethical and legal challenges
arising as a result of emerging and rapidly advancing genetic science. On
examining transatlantic perspectives on the matter, chapters in the book
askwhethertheUSGeneticInformationNondiscriminationAct(GINA)is
proving to be an effective tool in addressing the issue of genetic discrimi-
nation and alleviating fears of discrimination. The book also reviews what
insights may be gained from GINA within employment and health insur-
ance contexts, and asks how the UN Convention on the Rights of Persons
with Disabilities (CRPD) may impact similar debates within the European
Union. The book focuses particularly on the legislative and policy frame-
work in the European Union, with an emphasis on the gaps in protection
andthescopeforspecificlegislativeactioninthisarea.
This book will be of great interest to scholars and students of discrimi-
nation law, bioethics and disability law, and will be of considerable use to
legalpractitioners,medicalpractitionersandpolicy-makersinthisarea.
Gerard Quinn is University Professor and Director of the Centre for
DisabilityLawandPolicy,NationalUniversityofIreland,Galway.
AislingdePaorisLecturerinLawatDublinCityUniversity.
Peter Blanck is University Professor and Chairman of the Burton Blatt
InstituteatSyracuseUniversity,USA.
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Genetic Discrimination
Transatlantic perspectives on the case for
a European-level legal response
Edited by Gerard Quinn, Aisling de Paor
and Peter Blanck
Firstpublished2015
byRoutledge
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andbyRoutledge
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©2015selectionofeditorialmaterial,GerardQuinn,AislingdePaorand
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Geneticdiscrimination:transatlanticperspectivesonthecasefora
Europeanlevellegalresponse/editedbyGerardQuinn,AislingdePaor,
PeterBlanck.
pagescm
Includesbibliographicalreferencesandindex.
ISBN978-0-415-83693-7(hardback)—ISBN978-0-203-69429-9(ebk)
1.Geneticscreening—Lawandlegislation—UnitedStates.
2.Geneticscreening—Lawandlegislation—EuropeanUnioncountries.
3.UnitedStates.GeneticInformationNondiscriminationActof2008.
4.Discriminationinemployment—Lawandlegislation.5.Discriminationin
insurance—Lawandlegislation.6.Humanchromosomeabnormalities—
Diagnosis—Lawandlegislation—UnitedStates.7.Humanchromosome
abnormalities—Diagnosis—Lawandlegislation—EuropeanUnion
countries.8.ConventionontheRightsofPersonswithDisabilitiesand
OptionalProtocol(2007)I.Quinn,G.(Gerard),editor.II.DePaor,Aisling,
editor.III.Blanck,Peter,editor.
K3611.G46G432015
344.2404'36—dc23
2014025060
ISBN:978-0-415-83693-7(hbk)
ISBN:978-0-203-69429-9(ebk)
TypesetinBaskerville
byFiSHBooksLtd,Enfield
Contents
Notesoncontributors ix
Preface xvii
Acknowledgements xviii
1 Introduction 1
AISLINGDEPAOR,GERARDQUINNANDPETERBLANCK
SECTION1
Advances in genetic science and technology 9
2 Tracingthehistory,evolutionandfutureorientationofgenetic
scienceandtechnology 11
AISLINGDEPAORANDNOELLOWNDES
SECTION2
Ethical and legal dilemmas arising from emerging technologies 37
3 Diversityethicsandtheimpactofgenetictechnologies 39
JAVIERROMAÑACHCABRERO
4 Genes,identityandclinicalethicsunderconditionsofuncertainty 52
REBECCAWOLF,MICHAELJOSEPHYOUNG,MICHAELASHLEYSTEINAND
HAROLDJ.BURSZTAJN
5 Theuseofgeneticinformationoutsideofthetherapeutic
healthrelationship:Aninternationalperspective 68
J.ROSELKIM,SHAHADSALMANANDYANNJOLY
vi Contents
SECTION3
The United States legislative experience 95
6 USlegislativeandpolicyresponse:Somehistoricalcontextto
GINA 97
PETERBLANCKANDAISLINGDEPAOR
7 TheGeneticInformationNondiscriminationAct(GINA)2008 114
ANYAPRINCEANDMICHAELWATERSTONE
8 GeneticdiscriminationintheworkplaceafterGINA 128
ROBERTS.OLICK
SECTION4
Building the case for a European Union regulatory response 141
9 Geneticdiscriminationininsurance:LessonsfromTest Achats 143
JAMESDAVEY
10 Employmentpracticesinanewgenomicera:Acknowledging
competingrightsandstrikingabalance 161
AISLINGDEPAOR
11 Medical(genetic)examinationsfornon-healthpurposes:
TherelevanceofEuropeanlegalstandardsetting 177
HENRIETTEROSCAMABBING
12 Nationallegalandpolicyresponsestogeneticdiscriminationin
Europe:Thedifficultiesofregulation 192
INEVANHOYWEGHEN
13 GeneticdiscriminationandthedraftEuropeanUnionGeneral
DataProtectionRegulation 211
MARKTAYLOR
14 Accommodatinggenes:Disability,discriminationand
internationalhumanrightslaw 226
JANETE.LORD
Contents vii
SECTION5
Considering the way forward for the EU 243
15 Geneticdiscrimination:IsittimefortheEUtotakeonanew
challenge? 245
DELIAFERRI
16 Conclusion 269
AISLINGDEPAOR,GERARDQUINNANDPETERBLANCK
Index 275
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Notes on contributors
Peter Blanck (editor) is University Professor at Syracuse University, New
York,andChairmanoftheBurtonBlattInstituteatSyracuseUniversity,
one of the leading disability law and policy institutes in the United
States. Professor Blanck holds appointments at the Syracuse University
Colleges of Law, and Arts and Sciences, David B. Falk College of Sport
andHumanDynamics,SchoolofEducation,andtheMaxwellSchoolof
Citizenship and Public Affairs. He is Honorary Professor at the Centre
for Disability Law and Policy, at the National University of Ireland,
Galway.ProfessorBlanckreceivedaBachelorofArtsfromtheUniversity
of Rochester, a Juris Doctorate from Stanford University, where he was
President of the Stanford Law Review, and a PhD from Harvard
University.BlanckhaswrittenarticlesandbooksontheAmericanswith
Disabilities Act (ADA) and related laws, and received grants to study
disabilitylawandpolicy.
HaroldJ.BursztajnMDisanAssociateClinicalProfessorofPsychiatryand
a co-founder of the Program in Psychiatry and the Law at the
Massachusetts Mental Health Center and the Beth Israel Deaconess
Medical Center, Department of Psychiatry at Harvard Medical School.
HealsoservesasPresidentandCo-founderoftheAmericanUnitofthe
UNESCO Bioethics Chair and its American Bioethics Culture Institute.
Hehasauthorednumerouspeer-reviewedpublications,fivebooksanda
variety of educational materials on medical decision making, bioethics,
psychiatry and the law for public and the professions. He has an active
clinical and forensic neuropsychiatric practice. Dr. Bursztajn has been
qualified as a testifying expert in clinical and forensic neuropsychiatry.
Hehasreceivedavarietyofawardsandhonorsforhisworkasaclinician,
teacherandclinicaldecision-makingresearcher,includingbeingarecip-
ientoftheCliffordA.BargerExcellenceinMentoringAwardofHarvard
MedicalSchool.
James Davey has been Professor of Insurance Law at the University of
SouthamptonsinceSeptember2014.HewaspreviouslySeniorLecturer
in Law at Cardiff University. He writes primarily on insurance contract