1932
0
  1. Home
  2. A-Z Publications
  3. Annual Review of Genomics and Human Genetics
  4. Volume 21, 2020
  5. Article

Annual Review of Genomics and Human Genetics

Volume 21, 2020

Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination

Abstract

Concerns about genetic discrimination (GD) often surface when discussing research and innovation in genetics. Over recent decades, countries around the world have attempted to address GD using various policy measures. In this article, we survey these approaches and provide a critical commentary on their advantages and disadvantages. Our examination begins with regions featuring extensive policy-making activities (North America and Europe), followed by regions with moderate policy-making activities (Australia, Asia, and South America) and regions with minimal policy-making activities (the Middle East and Africa). Our analysis then turns to emerging issues regarding genetic testing and GD, including the expansion of multiomics sciences and direct-to-consumer genetic tests outside the health context. We additionally survey the shortcomings of current normative approaches addressing GD. Finally, we conclude by highlighting the evolving nature of GD and the need for more innovative policy-making in this area.

Keyword(s): comparative law, equality, genetic discrimination, Genetic Information Nondiscrimination Act, genetic testing, GINA, insurance
Loading

Article metrics loading...

/content/journals/10.1146/annurev-genom-111119-011436
2020-08-31
2024-04-25
Loading full text...

Full text loading...

/deliver/fulltext/genom/21/1/annurev-genom-111119-011436.html?itemId=/content/journals/10.1146/annurev-genom-111119-011436&mimeType=html&fmt=ahah

Literature Cited

  1. 1. 
    Abbott A. 2018. Can epigenetics help verify the age claims of refugees?. Nature Sept. 4. https://www.nature.com/articles/d41586-018-06121-w
    [Google Scholar]
  2. 2. 
    ADA Natl. Netw 2019. What is the Americans with Disabilities Act (ADA)?. ADA National Network https://adata.org/learn-about-ada
    [Google Scholar]
  3. 3. 
    Am. Soc. Hum. Genet 2019. Prohibiting genetic discrimination to promote science, health, and fairness. Am. J. Hum. Genet 104:6–7
     [Google Scholar]
  4. 4. 
    Assoc. Br. Insur. (ABI) 2018. Code on genetic testing and insurance Code Pract., ABI London:
  5. 5. 
    Assoc. Sav. Invest. SA (ASISA) 2009. Standard on Genetic Testing Stand. Doc., ASISA Newlands, S. Afr:.
  6. 6. 
    Aust. Law Reform Comm. (ALRC) 2010. Genetic status and disability in the DDA. Essentially Yours: The Protection of Human Genetic Information in Australia301–12 ALRC Rep. 96 Sydney: Aust. Law Reform Comm.
     [Google Scholar]
  7. 7. 
    Bélisle-Pipon J-C, Vayena E, Green RC, Cohen IG 2019. Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries. Nat. Med. 25:1198–204
     [Google Scholar]
  8. 8. 
    Bombard Y, Penziner E, Suchowersky O, Guttman M, Paulsen JS et al. 2008. Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease. Eur. J. Hum. Genet. 16:279–89
     [Google Scholar]
  9. 9. 
    Brame R, Bushway SD, Paternoster R, Turner MG 2014. Demographic patterns of cumulative arrest prevalence by ages 18 and 23. Crime Delinq 60:471–86
     [Google Scholar]
  10. 10. 
    Can. Life Health Insur. Assoc. (CLHIA) 2015. Genetic testing information for insurance underwriting Ind. Code, CLHIA Toronto:
  11. 11. 
    Can. Life Health Insur. Assoc. (CLHIA) 2019. Membership information. CLHIA https://www.clhia.ca/web/CLHIA_LP4W_LND_Webstation.nsf/page/A9F30B67A88893CB8525780E006423D0
    [Google Scholar]
  12. 12. 
    Counc. Eur 1997. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: convention on human rights and biomedicine Treaty 164, Counc. Eur Strasbourg, Fr:.
  13. 13. 
    Counc. Eur 2016. Recommendation CM/Rec(2016)8 of the Committee of Ministers to the member states on the processing of personal health-related data for insurance purposes, including data resulting from genetic tests Recomm. CM/Rec(2016)8, Counc. Eur Strasbourg, Fr:.
  14. 14. 
    Curtis C, Hereward J, Mangelsdorf M, Hussey K, Devereux J 2019. Protecting trust in medical genetics in the new era of forensics. Genet. Med. 21:1483–85
     [Google Scholar]
  15. 15. 
    de Koning KJFA. 2012. Dutch protection against genetic discrimination in work environments: adequate or non-existent? Rep., Tilburg Univ Tilburg, Neth: http://arno.uvt.nl/show.cgi?fid=122912
  16. 16. 
    Dickerson C. 2019. U.S. government plans to collect DNA from detained immigrants. New York Times Oct. 2. https://www.nytimes.com/2019/10/02/us/dna-testing-immigrants.html
    [Google Scholar]
  17. 17. 
    Dupras C, Song L, Saulnier KM, Joly Y 2018. Epigenetic discrimination: emerging applications of epigenetics pointing to the limitations of policies against genetic discrimination. Front. Genet. 9:202
     [Google Scholar]
  18. 18. 
    Econ. Soc. Counc. UN (ECOSOC) 2004. Genetic privacy and non-discrimination Resolut. 2004/9, ECOSOC New York:
  19. 19. 
    Ennis C. 2017. Forensic DNA profiling might be about to take a big leap forward. Are we ready?. Guardian Feb. 6. https://www.theguardian.com/science/occams-corner/2017/feb/06/forensic-dna-profiling-might-be-about-to-take-a-big-leap-forward-are-we-ready-epigenetics
    [Google Scholar]
  20. 20. 
    Eur. Union 2008. Council decision 2008/615/JHA of 23 June 2008 on the stepping up of cross-border cooperation, particularly in combating terrorism and cross-border crime. Off. J. Eur. Union L 210 1–11
     [Google Scholar]
  21. 21. 
    Farahany N, Chodavadia S, Katsanis SH 2019. Ethical guidelines for DNA testing in migrant family reunification. Am. J. Bioeth. 19:4–7
     [Google Scholar]
  22. 22. 
    Financ. Serv. Counc. (FSC) 2018. FSC announces moratorium on genetic tests for life insurance to start in July 2019 Press Release, Oct. 30, FSC Sydney: https://www.fsc.org.au/resources/1356-media-release-life-genetic-moratorium-30-october-2018
  23. 23. 
    Forensic Genet. Policy Init 2017. Establishing best practice for forensic DNA database Rep., Forensic Genet. Policy Init .
  24. 24. 
    Genet. Discrim. Obs. (GDO) 2019. A geographical overview of approaches adopted around the world to prevent genetic discrimination. GDO https://gdo.global/en/gdo-map-approaches
    [Google Scholar]
  25. 25. 
    Granados Moreno P, Ngueng Feze I, Joly Y 2017. Does the end justify the means? A comparative study of the use of DNA testing in the context of family reunification. J. Law Biosci. 4:250–81
     [Google Scholar]
  26. 26. 
    Green MJ, Botkin JR. 2003. Genetic exceptionalism in medicine: clarifying the differences between genetic and nongenetic tests. Ann. Intern. Med. 138:571–75
     [Google Scholar]
  27. 27. 
    Green RC, Lautenbach D, McGuire AL 2015. GINA, genetic discrimination, and genomic medicine. N. Engl. J. Med. 372:397–99
     [Google Scholar]
  28. 28. 
    Gupta JA. 2007. Private and public eugenics: genetic testing and screening in India. J. Bioeth. Inq. 4:217–28
     [Google Scholar]
  29. 29. 
    HUGO Ethics Comm 2003. Statement on human genomic databases. Eubios J. Asian Int. Bioethics 13:99
     [Google Scholar]
  30. 30. 
    Hum. Rights Watch 2017. China: minority region collects DNA from millions. Human Rights Watch https://www.hrw.org/news/2017/12/13/china-minority-region-collects-dna-millions
    [Google Scholar]
  31. 31. 
    Huntingt. Soc. Can 2019. The Genetic Non-Discrimination Act. Huntington Society of Canada https://www.huntingtonsociety.ca/gna
    [Google Scholar]
  32. 32. 
    Impact Ethics 2019. Genome-edited persons will need legal protections. Impact Ethics https://impactethics.ca/2019/02/15/genome-edited-persons-will-need-legal-protections
    [Google Scholar]
  33. 33. 
    Ind. Counc. Med. Res. (ICMR) 2017. National Ethical Guidelines for Biomedical and Health Research Involving Human Participants New Delhi: ICMR
  34. 34. 
    Joly Y, Braker M, Le Huynh M 2010. Genetic discrimination in private insurance: global perspectives. New Genet. Soc. 29:351–68
     [Google Scholar]
  35. 35. 
    Joly Y, Dupras C, Ngueng Feze I, Song L 2017. Genetic discrimination in Québec: a flexible and proactive approach to address a complex social issue Policy Brief, Cent. Genom. Policy, McGill Univ Montreal, Can:.
  36. 36. 
    Joly Y, Ngueng Feze I, Simard J 2013. Genetic discrimination and life insurance: a systematic review of the evidence. BMC Med 11:25
     [Google Scholar]
  37. 37. 
    Joly Y, Ngueng Feze I, Song L, Knoppers BM 2017. Normative approaches to address genetic discrimination: placebo or panacea?. Trends Genet https://ssrn.com/abstract=2911199
    [Google Scholar]
  38. 38. 
    Joly Y, Salman S, Ngueng Feze I, Granados Moreno P, Stanton-Jean M et al. 2017. DNA testing for family reunification in Canada: points to consider. J. Int. Migrat. Integr. 18:391–404
     [Google Scholar]
  39. 39. 
    Kayser M. 2015. Forensic DNA phenotyping: predicting human appearance from crime scene material for investigative purposes. Forensic Sci. Int. Genet. 18:33–48
     [Google Scholar]
  40. 40. 
    Kenen RH, Schmidt RM. 1978. Stigmatization of carrier status: social implications of heterozygote genetic screening programs. Am. J. Public Health 68:1116–20
     [Google Scholar]
  41. 41. 
    Kinsley N. 2009. The use of genetic tests by the individual life insurance industry in South Africa Res. Rep., Univ. Witwatersrand Johannesburg:
  42. 42. 
    Lawrence MW, Arias JJ. 2019. Alzheimer's disease biomarkers: another tool for FAA pilot screening. J. Law Biosci. 6:85–110
     [Google Scholar]
  43. 43. 
    Lee C, Voigt TH. 2020. DNA testing for family reunification and the limits of biological truth. Sci. Technol. Hum. Values 45:430–54
     [Google Scholar]
  44. 44. 
    Lemke T, Trump EF. 2010. Biopolitics: An Advanced Introduction New York: N.Y. Univ. Press
  45. 45. 
    Lemmens T, Pullman D, Rodal R 2010. Revisiting genetic discrimination issues in 2010: policy options for Canada GPS Policy Brief 2, Genome Can Ottawa:
  46. 46. 
    Maltz J. 2019. Israeli Rabbinate accused of using DNA testing to prove Jewishness. Haaretz Feb. 4. https://www.haaretz.com/israel-news/.premium-israeli-rabbinate-accused-of-using-dna-testing-to-prove-jewishness-1.6902132
    [Google Scholar]
  47. 47. 
    Marano L, Fridman C. 2019. DNA phenotyping: current application in forensic science. Res. Rep. Forensic Med. Sci. 9:1–8
     [Google Scholar]
  48. 48. 
    McGonigle IV, Herman LW. 2015. Genetic citizenship: DNA testing and the Israeli Law of Return. J. Law Biosci. 2:469–78
     [Google Scholar]
  49. 49. 
    M/S United India Insurance … v. Jai Parkash Tayal RFA 610/2016, CM 45832/2017 (High Ct. Delhi, 2018)
  50. 50. 
    M/S United India Insurance Co. v. Jai Prakash Tayal SLP 29590/2018 (S.C., 2018)
  51. 51. 
    Murray TH. 2019. Is genetic exceptionalism past its sell-by date? On genomic diaries, context, and content. Am. J. Bioethics 19:13–15
     [Google Scholar]
  52. 52. 
    Muto K, Sakurai Y. 2017. [The status of utilization of personal genetic information in the society and a survey of the literacy among the general public: a report of a specially commissioned project by the Ministry of Health, Labor and Welfare]. https://mhlw-grants.niph.go.jp/niph/search/NIDD00.do?resrchNum=201605018A (in Japanese)
  53. 53. 
    Natl. Health Sci. Res. Comm 2012. Policy requirements, procedures and guidelines for the conduct and review of human genetic research in Malawi [sections 18 & 48 of the S&T Act No. 16 of 2003] Policy Doc., Natl. Health Sci. Res. Comm Lilongwe, Malawi:
  54. 54. 
    Nicholls SG, Fafard P. 2016. Genetic discrimination legislation in Canada: moving from rhetoric to real debate. Can. Med. Assoc. J. 188:788–89
     [Google Scholar]
  55. 55. 
    Otlowski M, Tiller J, Barlow-Stewart K, Lacaze P 2019. Genetic testing and insurance in Australia. Austr. J. Gen. Pract. 48:96–99
     [Google Scholar]
  56. 56. 
    Phillips AM. 2016.. ‘ Only a click away—DTC genetics for ancestry, health, love…and more: a view of the business and regulatory landscape. .’ Appl. Transl. Genom. 8:16–22
     [Google Scholar]
  57. 57. 
    Phillips C. 2018. The Golden State Killer investigation and the nascent field of forensic genealogy. Forensic Sci. Int. Genet. 36:186–88
     [Google Scholar]
  58. 58. 
    Reference of the Government of Quebec concerning the constitutionality of the Genetic Non-Discrimination Act enacted by Sections 1 to 7 of the Act to prohibit and prevent genetic discrimination, 2018 QCCA 2193
    [Google Scholar]
  59. 59. 
    Regalado A. 2018. 2017 was the year consumer DNA testing blew up. MIT Technology Review Feb. 12. https://www.technologyreview.com/s/610233/2017-was-the-year-consumer-dna-testing-blew-up
    [Google Scholar]
  60. 60. 
    Regalado A. 2019. More than 26 million people have taken an at-home ancestry test. MIT Technology Review Feb. 11. https://www.technologyreview.com/s/612880/more-than-26-million-people-have-taken-an-at-home-ancestry-test
    [Google Scholar]
  61. 61. 
    Reilly P. 1976. State supported mass genetic screening programs. Genetics and the Law A Milunsky, GJ Annas 159–84 Boston: Springer
     [Google Scholar]
  62. 62. 
    Roberts J. 2010. Preempting discrimination: lessons from the Genetic Information Nondiscrimination Act. Vanderbilt Law Rev 63:439–90
     [Google Scholar]
  63. 63. 
    Rothstein MA. 2007. Genetic exceptionalism and legislative pragmatism. J. Law Med. Ethics 35:59–65
     [Google Scholar]
  64. 64. 
    Rothstein MA. 2008. GINA, the ADA, and genetic discrimination in employment. J. Law Med. Ethics 36:837–40
     [Google Scholar]
  65. 65. 
    Rothstein MA. 2009. GINA's beauty is only skin deep. GeneWatch 22:9–12
     [Google Scholar]
  66. 66. 
    Rothstein MA. 2013. Epigenetic exceptionalism. J. Law Med. Ethics 41:733–36
     [Google Scholar]
  67. 67. 
    Rothstein MA, Anderlik MR. 2001. What is genetic discrimination, and when and how can it be prevented. Genet. Med. 3:354–58
     [Google Scholar]
  68. 68. 
    Samuel G, Howard HC, Cornel M, van El C, Hall A et al. 2018. A response to the forensic genetics policy initiative's report “Establishing Best Practice for Forensic DNA Databases. .” Forensic Sci. Int. Genet. 36:e19–21
     [Google Scholar]
  69. 69. 
    Scudder M, McNevin D, Kelty SF, Funk C, Walsh SJ, Robertson J 2019. Policy and regulatory implications of the new frontier of forensic genomics: direct-to-consumer genetic data and genealogy records. Curr. Issues Crim. Justice 31:194–216
     [Google Scholar]
  70. 70. 
    Shabani M, Borry P, Smeers I, Bekaert B 2018. Forensic epigenetic age estimation and beyond: ethical and legal considerations. Trends Genet 34:489–91
     [Google Scholar]
  71. 71. 
    Taylor A. 2016. Kuwait plans to create a huge DNA database of residents and visitors. Scientists are appalled. Washington Post Sept. 4. https://www.washingtonpost.com/news/worldviews/wp/2016/09/14/kuwait-plans-to-create-a-huge-dna-database-of-resident-and-visitors-scientists-are-appalled
    [Google Scholar]
  72. 72. 
    UN Educ. Sci. Cult. Organ. (UNESCO) 1997. Universal declaration on the human genome and human rights Decl., UNESCO Paris: http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genome-and-human-rights
  73. 73. 
    UN Educ. Sci. Cult. Organ. (UNESCO) 2003. International declaration on human genetic data. Decl., UNESCO Paris: http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genetic-data
    [Google Scholar]
  74. 74. 
    Wee S-L. 2019. China uses DNA to track its people, with the help of American expertise. New York Times Feb. 21. https://www.nytimes.com/2019/02/21/business/china-xinjiang-uighur-dna-thermo-fisher.html
    [Google Scholar]
  75. 75. 
    Zeiger A, TOI Staff 2013. Russian-speakers who want to make aliya could need DNA test. Times of Israel July 29. https://www.timesofisrael.com/russian-speakers-who-want-to-immigrate-could-need-dna-test
    [Google Scholar]
/content/journals/10.1146/annurev-genom-111119-011436
Loading
  • Article Type: Review Article

Most Cited Most Cited RSS feed

This is a required field
Please enter a valid email address
Approval was a Success
Invalid data
An Error Occurred
Approval was partially successful, following selected items could not be processed due to error