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Genetic Discrimination: International Perspectives  M. Otlowski, 1 S. Taylor, 2 and Y. Bombard 3,4,∗ 1 Faculty of Law and  2 School of Sociology and Social Work, University of Tasmania, Hobart, Tasmania 7001, Australia; email: [email protected] 3 Department of Epidemiology and Public Health, Division of Health Policy and  Administration, Yale University, New Haven, Connecticut 06510 4 Department of Epidemiology and Biostatistics, Center for Health Policy and Outcomes,  Memorial Sloan-Kettering Cancer Center, New York, NY 10065; email: [email protected]  Annu. Rev. Genomics Hum. Genet. 2012. 13:433–54 First published online as a Review in Advance on  May 15, 2012  The Annual Review of Genomics and Human Genetics is online at genom.annualreviews.org  This article’s doi: 10.1146/annurev-genom-090711-163800 Copyright  c  2012 by Annual Reviews.  All rights reserved 1527-8204/12/0922-0433$20.00 ∗  All authors contributed equally. Keywords stigmatization, impact, responses, strategies, law, policy  Abstract Genetic discrimination (GD) is a complex, multifaceted ethical, psy- chosocial, and legal phenomenon. It is defined as the differential treat- ment of asymptomatic individuals or their relatives on the basis of their rea l or ass ume d gen eticchara cte ris tic s. Th is art icl e presents an ove rvi ew of GD within the contemporary international context. It describes the concept of GD and its contextual features, reviews research evidence regarding people’s experiences of GD and the impact of GD within a ran ge of domains, andprovid es an ove rvie w of leg al andpolicyrespon ses to GD that have emerged globally. We argue that GD is a significant and internationally established phenomenon that requires multilevel responses to ensure social justice and equitable outcomes for all citi- zens. Future research should monitor GD and its impacts within the community as well as institutions and should evaluate the effectiveness of legislative, policy, community education, and systemic responses.  433    A   n   n   u  .    R   e   v  .    G   e   n   o   m  .    H   u   m   a   n    G   e   n   e    t  .    2    0    1    2  .    1    3   :    4    3    3      4    5    4  .    D   o   w   n    l   o   a    d   e    d    f   r   o   m    w   w   w  .   a   n   n   u   a    l   r   e   v    i   e   w   s  .   o   r   g    b   y    1    1    5  .    1    3    2  .    1    0    7  .    1    8    5   o   n    1    2    /    0    2    /    1    3  .    F   o   r   p   e   r   s   o   n   a    l   u   s   e   o   n    l   y  . Click here for quick links to Annual Reviews content online, including: • Other articles in this volume • Top cited articles • Top downloaded articles • Our comprehensive search Further ANNUAL REVIEWS

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http://www.annualreviews.org/
http://www.ada.gov/pubs/adastatute08.htm
http://www.eeoc.gov/laws/statutes/gina.cfm
http://www.legislation.govt.nz/act/public/1993/0082/latest/DLM304212.html
http://laws.justice.gc.ca/eng/charter/
http://www.austlii.edu.au/au/legis/cth/consol_act/dda1992264/
http://www.legislation.gov.uk/ukpga/2010/15/contents
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.servat.unibe.ch/icl/sz00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.servat.unibe.ch/icl/sp00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.isciii.es/ISCIII/es/contenidos/fd-investigacion/SpanishLawonBiomedicalResearchEnglish.pdf
http://www.servat.unibe.ch/icl/si00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.servat.unibe.ch/icl/lo00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.cada.pt/uploads/c28ce883-8bb0-4aa4.pdf
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.eshg.org/fileadmin/www.eshg.org/documents/Europe/LegalWS/Portugal_Law_English_Summary.pdf
http://www.servat.unibe.ch/icl/pl00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.servat.unibe.ch/icl/no00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.ub.uio.no/ujur/ulovdata/lov-20031205-100-eng.pdf
http://www.servat.unibe.ch/icl/nl00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.dredf.org/international/netherlands.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.servat.unibe.ch/icl/lu00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.legilux.public.lu/leg/textescoordonnes/codes/code_penal/cp_L2T08.pdf
http://www3.lrs.lt/home/Konstitucija/Constitution.htm
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.servat.unibe.ch/icl/lg00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.servat.unibe.ch/icl/it00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.irishstatutebook.ie/2005/en/act/pub/0014/index.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.egyenlobanasmod.hu/data/SZMM094B.pdf
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.eurogentest.org/uploads/1247230263295/GenDG_German_English.pdf
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www2.ohchr.org/english/bodies/crc/docs/AdvanceVersions/Patients'_Rights_48Georgia.doc
http://www.assemblee-nationale.fr/english/8ab.asp
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.who.int/genomics/elsi/regulatory_data/region/euro/087/en/index.html
http://www.servat.unibe.ch/icl/fi00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.finlex.fi/en/laki/kaannokset/2004/en20040759.pdf
http://www.servat.unibe.ch/icl/en00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://biochem118.stanford.edu/Papers/Genome%20Papers/Estonian%20Genome%20Res%20Act.pdf
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.hsph.harvard.edu/population/abortion/DENMARK.abo.htm
http://spcp.prf.cuni.cz/aj/2-93en.htm
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.servat.unibe.ch/icl/cy00000_.html
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.ombudsman.hr/dodaci/The_anti-discrimination_act.pdf
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://conventions.coe.int/Treaty/en/Treaties/Html/164.htm
http://www.servat.unibe.ch/icl/be00000_.html
http://www.servat.unibe.ch/icl/au00000_.html
http://www.eshg.org/fileadmin/www.eshg.org/documents/EuropLegalWS/AustrianGeneTechnologyAct_English.pdf
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http://www.ccgf-cceg.ca/
http://www.intga.org/
http://www.nowgen.org.uk/
http://www.genetics.edu.au/
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http://onlinelibrary.wiley.com/doi/10.1002/9780470015902.a0005203.pub2/abstract
http://onlinelibrary.wiley.com/doi/10.1002/9780470015902.a0005203.pub2/abstract
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http://www.europarl.europa.eu/charter/pdf/text_en.pdf
http://www.europarl.europa.eu/charter/pdf/text_en.pdf
http://www.genetics.edu.au/pdf/factsheets/fs23a.pdf
http://www.genetics.com.au/pdf/factsheets/fs08.pdf
http://www.genetics.com.au/pdf/factsheets/fs08.pdf
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http://www.hugo-international.org/img/genomic_2002.pdf
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http://www.mikecolle.com/DocumentEN.aspx?id
http://www.mikecolle.com/DocumentEN.aspx?id
http://www.nuigalway.ie/cdlp/geneticdiscrimination.html
http://www.genomecanada.ca/medias/pdf/en/GPS-Policy-Directions-Brief-2-EN.pdf
http://www.genomecanada.ca/medias/pdf/en/GPS-Policy-Directions-Brief-2-EN.pdf
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http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genetic-data
http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genetic-data
http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genome-and-human-rights
http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genome-and-human-rights
http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genome-and-human-rights
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