Genetic Discrimination: Information Privacy in Public and Private Sectors

Authors

  • Colleen Faulkner

DOI:

https://doi.org/10.5931/djim.v13i1.6927

Keywords:

Privacy, Genetic Discrimination, Insurance Industry, Health Information

Abstract

Deoxyribonucleic acid (DNA), is the information of life. The scientific understanding of genetics and biotechnology has resulted in the increased availability and affordability of genetic testing. Such testing can provide valuable information to help individuals make informed decisions regarding their lifestyle and health care. In today‘s era of big data and the internet, if such information finds itself in the wrong hands there can be consequences. Genetic discrimination, the unfair treatment of people due to their genetic makeup, often takes place in the insurance industry and by employers. While there are acts and bills to protect Canadian‘s personal information in both the public and private sector, Canada remains the only G-7 country without specific protections against genetic discrimination. With the recent passing of Bill S-201: An Act to Prohibit and Prevent Genetic Discrimination in the Senate, Canada is on the cusp of passing legislation to prohibit the requirement for genetic testing, and/or disclosure of test results, in areas such as the provision of insurance and employment. 

Author Biography

Colleen Faulkner

Colleen‘s professional experience focuses on project support and coordination. Currently, as Program Coordinator at Continuing Professional Development, Dalhousie University, she supports the delivery of educational programs to physicians and healthcare professionals. Academically, Colleen holds a Master of Science in Applied Human Nutrition from Mount Saint Vincent University in Halifax, along with a Bachelor of Science in Biochemistry (Dietetics) from Memorial University of Newfoundland. She is currently a part-time student in the Master of Library and Information Studies program at Dalhousie University with an interest in health information management, research, and privacy. This paper was originally written for INFO 5500: Information in Society.

References

andMe, Inc. (2016a). How it works. Retrieved from https://www.23andme.com/en

ca/howitworks/

andMe, Inc. (2016b). Privacy highlights. Retrieved from

https://www.23andme.com/en-ca/about/privacy/

Access to Information Act, Revised Statutes of Canada, 1985, c. A-1. Retrieved from http://laws-lois.justice.gc.ca/PDF/A-1.pdf

Adjin-Tettey, E. (2013). Potential for genetic discrimination in access to insurance: Is

there a dark side to increased availability of genetic information? Alberta Law Review, 50(3), 577-614.

Advisory Council on Health Infostructure. (1999). Paths to better health: Final report. Retrieved from http://dspace.ucalgary.ca/bitstream/1880/43058/1/CHIpaths1999.pdf

Bill 89: Personal Health Information Act. (2010). 61st General Assembly, 2nd Session. Halifax: Nova Scotia Legislature. Retrieved from http://nslegislature.ca/legc/bills/61st_2nd/3rd_read/b089.htm

Bill S-201: An Act to Prohibit and Prevent Genetic Discrimination. (2016). 42nd

Parliament, 1st Session. Ottawa: Senate of Canada. Retrieved from http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=8185825

Canada Health Infoway. (2012). What Canadian‘s think: Electronic health information and privacy survey 2012. Retrieved from https://www.infoway-inforoute.ca/en/component/edocman/resources/reports/privacy/461-ipsos-reid-survey-on-electronic-health-information-and-privacy

Canada Health Infoway. (2016). Connecting patients for better health: 2016. Retrieved from https://www.infoway-inforoute.ca/en/component/edocman/3152-connecting-patients-for-better-health-2016/view-document?Itemid=101

Canadian Coalition for Genetic Fairness. (2015). About genetic discrimination.

Retrieved from http://ccgf-cceg.ca/en/about-genetic-discrimination/

Canadian Life and Health Insurance Association. (2016a). Canadian life and health insurance facts, 2016 edition. Retrieved from https://www.clhia.ca/domino/html/clhia/CLHIA_LP4W_LND_Webstation.nsf/483b14f0df72bb2a8525783b0072662e/6b3ac3ea7f05bc6e8525802e006851eb!OpenDocument

Canadian Life and Health Insurance Association. (n.d.). Industry code: Genetic testing information for insurance underwriting. Retrieved from https://www.clhia.ca/domino/html/clhia/CLHIA_LP4W_LND_Webstation.nsf/resources/Guidelines/$file/Industry_Code_Genetic_Testing.pdf

Retrieved from Canadian Life and Health Insurance Association. (2016b). Mission and objectives. Retrieved from https://www.clhia.ca/domino/html/clhia/CLHIA_LP4W_LND_Webstation.nsf/page/6EBFE54D9D076C568525780E0056B1BE?OpenDocument

Canadian Medical Association. (2011). Principles for the protection of patients‘ personal

health information. Retrieved from http://policybase.cma.ca/dbtw-wpd/Policypdf/PD11-03.pdf

Caulfield, T. (2015, December 7). The cure – column. Policy Options. Retrieved from http://policyoptions.irpp.org/magazines/december-2015/geneticdiscrimination/

Department of Health and Wellness. (n.d.). Your personal health information and the Department of Health and Wellness. Retrieved from http://novascotia.ca/dhw/phia/privacy/DHW-Notice-of-Purposes.pdf

Department of Health and Wellness. (2014). Personal Health Information Act. Retrieved from http://novascotia.ca/dhw/phia/

EasyDNA. (2016). About us. Retrieved from https://www.easydna.ca/about-us/

Freedom of Information and Protection of Privacy Act, Province of Nova Scotia, 1993, c. 5, s.1. Retrieved from http://nslegislature.ca/legc/statutes/freedom%20of%20information%20and%20protection%20of%20privacy.pdf

Genetic Alliance. (n.d.). Genetic discrimination. Retrieved from

http://www.geneticalliance.org/advocacy/policyissues/geneticdiscrimination

Government of Canada. (1982). Canadian Charter of Rights and Freedoms. Retrieved from http://laws-lois.justice.gc.ca/eng/const/page-15.html

Government of Canada. (1985). Canadian Human Rights Act (R.S.C., 1985, c. H-6). Retrieved from http://laws-lois.justice.gc.ca/eng/acts/h-6/

Government of Canada. (2016). About the ATIP program. Retrieved from http://www.infosource.gc.ca/emp/emp01-eng.asp#atip

Griffith-Greene, M. (2015, April 2). Home DNA tests may affect insurance, employment. CBC News. Retrieved from http://www.cbc.ca/news/health/home-dna-tests-may-affect-insurance-employment-1.3018086

Human Genetics Society of Australia. (2017). Guidelines: Pre-symptomatic and predictive testing for genetic disorders. Retrieved from https://www.hgsa.org.au/documents/item/1574

Izaak Walton Killam Health Centre. (2016). The Maritime newborn screening program. Retrieved from http://www.iwk.nshealth.ca/newbornscreening

Joly, Y., Ngueng Feze, I., & Simar, J. (2013). Genetic discrimination and life insurance: a systematic review of the evidence. BMC Medicine, 11:25. doi: 10.1186/1741-7015-11-25.

LaForest, G. V. (2005). The offices of the information and privacy commissioners: The merger and related issues. Retrieved from http://www.justice.gc.ca/eng/rp-pr/csj-sjc/atip-aiprp/ip/rep-rap.pdf

National Human Genome Research Institute. (2016). Genetic discrimination. Retrieved from https://www.genome.gov/10002077/

National Library of Medicine. (2016a). Help me understand genetics: Genetic

testing. Retrieved from https://ghr.nlm.nih.gov/primer

National Library of Medicine. (2016b). What is a gene? Retrieved from https://ghr.nlm.nih.gov/primer/basics/gene

National Library of Medicine. (2016c). What is genetic discrimination? Retrieved

from https://ghr.nlm.nih.gov/primer/testing/discrimination

National Library of Medicine. (2017). What is direct-to-consumer genetic testing? Retrieved from https://ghr.nlm.nih.gov/primer/testing/directtoconsumer

MacLeod, I. (2016, February 18). Clash brewing over genetic privacy as insurance industry tries to get as much data as possible to assess risk. National Post. Retrieved from http://news.nationalpost.com/news/canada/clash-brewing-over-genetic-privacy-as-insurance-industry-tries-to-get-as-much-data-as-possible-to-assess-risk

Office of the Privacy Commissioner of Canada. (2014). Overview of privacy legislation in Canada. Retrieved from https://www.priv.gc.ca/en/privacy-topics/privacy-laws-in-canada/02_05_d_15/

Office of the Privacy Commissioner of Canada. (2015). Privacy toolkit: A guide for

businesses and organizations. Retrieved from https://www.priv.gc.ca/media/2038/guide_org_e.pdf

Office of the Privacy Commissioner of Canada. (2017). Direct-to-consumer genetic testing and privacy. Retrieved from https://www.priv.gc.ca/en/privacy-topics/health-genetic-and-other-body-information/02_05_d_69_gen/

Ontario Genomics. (n.d.). Ontario personalized medicine network. Retrieved from

http://www.ontariogenomics.ca/impact/policy-impact/opmn

Pollara Earnscliffe. (2003). Public opinion research into genetic privacy issues. Ottawa: Pollara Research and Earnscliffe Research and Communications.

Privacy Act, Revised Statutes of Canada, 1985, c. P-21. Retrieved from

http://laws-lois.justice.gc.ca/eng/acts/p-21/

Prosser, S. (2000). Personal health information and the right to privacy in Canada.

Retrieved from http://fipa.bc.ca/library/Reports_and_Submissions/Personal_Health_Information_and_the_Right_to_Privacy_in_Canada-May_2000.pdf

Province of Nova Scotia. (2008). Respecting your access and privacy rights: A citizen‘s

guide for Nova Scotians. Retrieved from https://foipop.ns.ca/sites/default/files/publications/Plain-Language-Guide/FOIPOP-PLG.pdf

R. v. Dyment, 2 S.C.R. 417. (Supreme Court of Canada, 1988, December 8). Retrieved from http://scc-csc.lexum.com/scc-csc/scc-csc/en/item/375/index.do

Spears, J. (2014, Sept. 25). Insurers won‘t demand genetic tests. The Star. Retrieved from https://www.thestar.com/business/personal_finance/2014/09/25/insurers_wont_demand_genetic_tests.html

The Tech Museum of Innovation. (2013). What is a gene? Retrieved from

http://genetics.thetech.org/about-genetics/what-gene

United Nations Educational, Scientific and Cultural Organization. (1997). Universal Declaration on the Human Genome and Human Rights. Retrieved from http://portal.unesco.org/en/ev.phpURL_ID=13177&URL_DO=DO_TOPIC&URL_SECTION=201.html

United States. (2008). The Genetic Information Nondiscrimination Act of 2008 (GINA). Retrieved from https://www.gpo.gov/fdsys/pkg/PLAW-110publ233/html/PLAW-110publ233.htm

United States Department of Labour. (2009). The Genetic Information Nondiscrimination Act of 2008 (GINA). Retrieved from https://permanent.access.gpo.gov/gpo10163/fsgina.pdf

Warren, S. C., & Brandeis, L. D. (1890). The right of privacy. Harvard Law Review, 4, 193 – 195.

Downloads

Published

2017-04-06

Issue

Section

Articles