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Time to End the Use of Genetic Test Results in Life Insurance Underwriting

Published online by Cambridge University Press:  01 January 2021

Abstract

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Type
Columns: Currents in Contemporary Bioethics
Copyright
Copyright © American Society of Law, Medicine and Ethics 2018

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References

Billings, P. et al., “Genetic Discrimination as a Consequence of Genetic Testing,” American Journal of Human Genetics 50, no. 3 (1992): 476-482; NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research, “Genetic Information and Health Insurance” (1993).Google Scholar
National Human Genome Research Institute (NHGRI), Genome Statute and Legislation Database, available at <https://www.genome.gov/policyethics/legdatabase/pubsearchresult.cfm> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
42 U.S.C. § 2000ff.Google Scholar
Colo. Rev. Stat. § 10-3-1104; Minn. Stat. § 72A.139; N.Y. Ins. Law § 2615; Or. Rev. Stat. § 746.135.Google Scholar
Kan. Stat. Ann. § 40-2259; Me. Rev. Stat. Ann. tit. 24A, § 2159-C; N.M. Stat. Ann. § 24-21-1 et seq.; Wis. Stat. Ann. § 942.07. These laws are of questionable necessity because unfair trade practice laws in every state prohibit the pricing of any insurance product that is not actuarially justified.Google Scholar
National Human Genome Research Institute, “Human Genome Project Completion: Frequently Asked Questions: How Much Did the Human Genome Project Cost U.S. Taxpayers?,” available at <https://www.genome.gov/11006943/human-genome-project-completion-frequently=asked-questions> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
Hayden, E.C., “Is the $1,000 Genome for Real?” Nature 507, no. 7492 (2014): 294-295.Google Scholar
Illumina, Press Release, Illumina Introduces the NovaSeq Series – A New Architecture Designed to Usher in the $100 Genome, available at <https://www.illumina.com/company/news-center/press-releases/press-release-details.html?newsid=2236383> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
Dong, L. et al., “Clinical Next Generation Sequencing for Precision Medicine in Cancer,” Current Genomics 16, no. 4 (2015): 253-263.Google Scholar
Regalado, A., “EmTech: Illumina Says 228,000 Human Genomes Will Be Sequenced This Year,” MIT Technology Review, Sept. 24, 2014, available at <https://www.technologyreview.com/s/531091/emtech-illumina-says-228000-human-genomes-will-be-sequenced-this-year> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
National Institutes of Health, All of Us Research Program, available at <https://allofus.nih.gov> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
Jain, M. et al., “Nanopore Sequencing and Assembly of a Human Genome with Extra-Long Reads,” Nature Bio-technology 36, no. 4 (2018): 338-345, doi:10.1038/nbt.4060.Google Scholar
Insurance Information Institute, Facts + Statistics: Industry Overview, available at <www.iii.org/fact-statistic/facts-statistics-industry-overview> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
A related technology already is used in the secondary life insurance market. GWG Holdings purchases life insurance policies in the secondary market. Its subsidiary, Life Epigenetics, uses epigenetic technology (levels of certain methylated biomarkers) to predict life expectancy of the policyholders. See “Life Epigenetics, GWG Holdings' Insurtech Subsidiary, Releases Infographic Timeline of the Impact of Epigenetics on the Insurance Industry,” December 7, 2017, available at <https://globenewswire.com/news-release/2017/12/07/1247777/0/en/Life-Epigenetics-GWG> (last visited August 3, 2018). Although there is little evidence in the literature confirming the validity of this test, the company plans to sell the technology to other insurance companies. “GWG Life Becomes First Insurtech Firm to Collect Epigenetic Samples to Analyze Biomarkers of Life Insurance Policy Holders,” March 2, 2017, available at <https://globenewswire.com/news-release/2017/03/02/930557/0/en/GWG-Life-Becomes-First> (last visited August 3, 2018). (last visited August 3, 2018). Although there is little evidence in the literature confirming the validity of this test, the company plans to sell the technology to other insurance companies. “GWG Life Becomes First Insurtech Firm to Collect Epigenetic Samples to Analyze Biomarkers of Life Insurance Policy Holders,” March 2, 2017, available at (last visited August 3, 2018).' href=https://scholar.google.com/scholar?q=A+related+technology+already+is+used+in+the+secondary+life+insurance+market.+GWG+Holdings+purchases+life+insurance+policies+in+the+secondary+market.+Its+subsidiary,+Life+Epigenetics,+uses+epigenetic+technology+(levels+of+certain+methylated+biomarkers)+to+predict+life+expectancy+of+the+policyholders.+See+“Life+Epigenetics,+GWG+Holdings'+Insurtech+Subsidiary,+Releases+Infographic+Timeline+of+the+Impact+of+Epigenetics+on+the+Insurance+Industry,”+December+7,+2017,+available+at++(last+visited+August+3,+2018).+Although+there+is+little+evidence+in+the+literature+confirming+the+validity+of+this+test,+the+company+plans+to+sell+the+technology+to+other+insurance+companies.+“GWG+Life+Becomes+First+Insurtech+Firm+to+Collect+Epigenetic+Samples+to+Analyze+Biomarkers+of+Life+Insurance+Policy+Holders,”+March+2,+2017,+available+at++(last+visited+August+3,+2018).>Google Scholar
Subramanian, K. et al., “Estimating Adverse Selection Costs from Genetic Testing for Breast Cancer and Ovarian Cancer: The Case of Life Insurance,” Journal of Risk and Insurance 66, no. 4 (1999): 531-550.Google Scholar
Family health history would be even more important if new laws were enacted or insurance industry policies changed to prohibit the use of individual genetic test results. Therefore, disclosure of family health history will be more important. See Prince, A., “Tantamount to Fraud: Exploring Non-Disclosure of Genetic Information in Life Insurance Applications as a Grounds for Policy Rescission,” Health Matrix 26, no. 1 (2016): 255-307.Google Scholar
Facts about MIB, available at <http:www.mib.com/facts_about_mib.html> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
Other reasons for a lack of family history include a new mutation or low penetrance, the applicant is an orphan or adoptee, or there is misattributed parentage.Google Scholar
Campion, D. et al., “Early-Onset Auto-somal Dominant Alzheimer Disease: Prevalence, Genetic Heterogeneity, and Mutation Spectrum,” American Journal of Human Genetics 65, no. 3 (1999): 664-670.Google Scholar
Fuglsang-Frederiksen, A., “Diagnostic Criteria for Amyotrophic Lateral Sclerosis (ALS),” Clinical Neurophysiology 119, no. 3 (2008): 495-496.Google Scholar
Gusella, J. F. and MacDonald, M., “Genetic Criteria for Huntington's Disease Pathogenesis,” Brain Research Bulletin 72, no. 2 (2007): 78-82.CrossRefGoogle Scholar
Hiseda, M. et al., “Multiple Primary Cancers in Families with Li-Fraumeni Syndrome,” Journal of the National Cancer Institute 90, no. 8 (1998): 606-611.Google Scholar
Lynch, H.T., “Review of the Lynch Syndrome: History, Molecular Genetics, Screening, Differential Diagnosis, and Medicolegal Ramifications,” Clinical Genetics 76, no. 1 (2009): 1-18.Google Scholar
Ford, D. et al., “Risk of Cancer in BRCA 1-Mutation Carriers,” Lancet 343, no. 8899 (1994): 789-792.Google Scholar
Metcalfe, M.K. et al., “The Risk of Breast Cancer in BRCA 1 and BRCA 2 Mutation Carriers without a First-Degree Relative with Breast Cancer,” Clinical Genetics 93, no. 5 (2017): 1063-1068, doi: 10.1111/cge.1391.Google Scholar
Chen, S. et al., “Characterization of BRCA1 and BRCA2 Mutations in a Large US Sample,” Journal of Clinical Oncology 24, no. 6 (2006): 863-871.Google Scholar
Lowden, J.A., “Underwriting Genetic Diseases,” in Brackenridge, R.D.C., Croxson, R.S., and Mackenzie, R. eds., Medical Selection of Life Risks, (Swiss Re 5th ed.) (London: Palgrave Macmillan 2006): 99-114.Google Scholar
Balmana, J., Diez, O., and Castiglione, M., “BRCA in Breast Cancer: ESMO Clinical Recommendations,” Annals of Oncology 20, no. Supp. 4 (2006): iv19-iv20, available at <https://doi.org/10/1093/annonc/mdp116> (last visited August 3, 2018).Google Scholar
Lowden, J.A., “Genetic Risks and Mortality Rates,” in Rothstein, M.A., ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge, MA: MIT Press, 2004): 95-118, 108.Google Scholar
Copson, E.R. et al., “Germline BRCA Mutation and Outcome in Young-Onset Breast Cancer (POSH): A Prospective Cohort Study,” Lancet Oncology 19, no. 2 (2018): 169-180, available at <http:dx.doi.org/10.1016/s1470-2045(17)30891-4> (last visited August 3, 2018).CrossRefGoogle Scholar
Li, X. et al., “Effectiveness of Prophylactic Surgeries in BRCA1 or BRCA2 Mutation Carriers: A Meta-Analysis and Systematic Review,” Clinical Cancer Research 22, no. 15 (2016): Of1-OF11, doi:10.1158/1078-0432.CCR-15-1465.Google Scholar
J.A. Lowden, supra note 31.Google Scholar
Association of British Insurers, “Concordat and Moratorium on Genetics and Insurance,” HM Government, available at <https:www.abi.org.uk/globalassets/sitecore/files/documents/publications/public/2014/genetics/concordat-and-moratorium-on-genetics-and-insurance.pdf> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
“Canadian Life Insurers to Limit Use of Genetic Test Results,” The Canadian Press, January 11, 2017, available at <http://www.cbc.ca/news/business/canada-life-insurance-genetic-testing-1.3930664> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
Genetic Non-Discrimination Act, R.S.C. 2017, c.3.Google Scholar
Genetic Non-Discrimination Act, R.S.C. R.S.C. 2017, c.3, s.7 par. (a).Google Scholar
Council of Europe, 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 (Oviedo), articles 11 and 12, https://www.coe.int>conventions (last accessed August 3, 2018).conventions+(last+accessed+August+3,+2018).>Google Scholar
Charter of Fundamental Rights of the European Union art 21, 2012 O.J.C. 326/391.Google Scholar
Joly, Y. et al., “Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?” (2017), available at <http://ssrn.com/abstract=2911199> (last accessed August 3, 2018).+(last+accessed+August+3,+2018).>Google Scholar
Daniels, N., “The Functions of Insurance and the Fairness of Genetic Underwriting,” in Rothstein, M.A., ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge, MA: MIT Press, 2004): 119-145, 124.Google Scholar
For an argument in support of “rational discrimination” as compared to the current U.S. status quo, see Prince, A., “Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?” Nebraska Law Review 94, no. 3 (2018): 624-687.Google Scholar
42 U.S.C. § 300gg-300gg-2.Google Scholar
Patient Protection and Affordable Care Act of 2010, 42 U.S.C. § 18001 et seq. (2010).Google Scholar
For example, section 2(5) of GINA provides that the purpose of the law is to “fully protect the public from discrimination and to allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.”Google Scholar
Rothstein, M.A., “Policy Recommendations,” Genetics and Life Insurance: Medical Underwriting and Social Policy, Rothstein, M.A., ed. (Cambridge, MA: MIT Press, 2004): 233-265, 234.Google Scholar
Aktan-Collan, K., “Predictive Genetic Testing for Hereditary Non-Polyposis Colorectal Cancer: Uptake and Long-Term Satisfaction,” International Journal of Cancer 89, no. 1 (2000): 44-50; Lodder, L. et al., “Attitudes and Distress Levels in Women at Risk to Carry a BRCA1/BRCA2 Gene Mutation Who Decline Genetic Testing,” American Journal of Medical Genetics 119A, no. 3 (2003): 266-272.3.0.CO;2-3>CrossRefGoogle Scholar
Green, R.C., Lautenbach, D., and McGuire, A.L., “GINA, Genetic Discrimination, and Genomic Medicine,” New England Journal of Medicine 372, no. 5 (2015): 397-399; Penziner, E., “Perceptions of Discrimination among Persons Who Have Undergone Predictive Testing for Huntington Disease,” American Journal of Medical Genetics 147B, no. 3 (2008): 320-325; and Robinson, J.O., “Participants and Study Decliners' Perspectives about the Risks of Participating in a Clinical Trial of Whole Genome Sequencing,” Journal of Empirical Research on Human Research Ethics 1-10 (2016), doi: 10.1177/1556264615624078.CrossRefGoogle Scholar
Uhlmann, W.R. and Terry, S.F., “Perspectives of Consumers and Genetics Professionals,” in Rothstein, M.A., ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge, MA: MIT Press, 2004): 147-172; Hall, M.A. et al., “Genetic Privacy Laws and Patients' Fear of Discrimination by Health Insurers: The View from Genetic Counselors,” Journal of Law, Medicine & Ethics 28, no. 3 (2007): 245-257.Google Scholar
Vt. Stat. Ann. tit. 18, § 9334(a).Google Scholar
For example, according to one calculation, if patients with a known risk of HNPCC had a screening colonoscopy it would increase their life expectancy by seven to nine years. Vasen, H.F.A. et al., “A Cost Effectiveness Analysis of Colorectal Screening for Hereditary Nonpolyposis Colorectal Carcinoma Gene Carriers,” Cancer 82, no. 9 (1998): 1632-1637.Google Scholar
Tomooda, C. et al., “Cribriform-Morular Variant of Papillary Thyroid Carcinoma: Clue to Early Detection of Familial Adenomatous Polyposis-Associated Colon Cancer,” World Journal of Surgery 28, no. 9 (2004): 886-889.Google Scholar
Sugimoto, S. et al., “Recognition of and Recent Issues in Hereditary Diffuse Gastric Cancer,” Journal of Gastric Cancer 50, no. 8 (2015): 831-843.Google Scholar
Plevritis, S.K. et al., “Association of Screening and Treatment with Breast Cancer Mortality by Molecular Subtype in US Women, 2000-2012,” Journal of the American Medical Association 319, no. 2 (2018): 154-164.Google Scholar
Kaiser, J., “‘Liquid Biopsy’ for Cancer Promises Early Detection,” Science 359, no. 6373 (2018): 259.Google Scholar
I thank Robert Green for this observation.Google Scholar
I thank Paul Billings for this observation.Google Scholar
NHGRI, supra note 2. Much of the concern about employment discrimination is related to employers' role in providing health insurance benefits.Google Scholar
42 U.S.C. § 2000ff.Google Scholar
Rothstein, M.A., Roberts, J., and Guidotti, T.L., “Limiting Occupational Medical Evaluations under the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act,” American Journal of Law & Medicine 41, no. 4 (2015): 523-567, 552-554.Google Scholar
NHGRI, supra note 2.Google Scholar
GINA, supra note 4.Google Scholar
ACA, supra note 51.Google Scholar
Rothstein, M.A., “Predictive Genetic Testing for Alzheimer's Disease in Long-Term Care Insurance,” Georgia Law Review 35, no. 2 (2001): 707-733; Taylor, D.H. Jr., et al., “Genetic Testing for Alzheimer's and Long-Term Care Insurance,” Health Affairs 29, no. 1 (2010): 102-108; Zick, C. et al., “Genetic Testing for Alzheimer's Disease and its Impact on Insurance Purchasing Behavior,” Health Affairs 24, no. 2 (2005): 483-490.Google Scholar
Gleckman, H., “The Traditional Long-Term Care Insurance Market Crumbles,” Forbes (2017), available at <https:www.forbes.com/sites/howard-gleckman/2017/09/08/the-traditional-long-term-care-insurance-market-crumbles#5116467a3ec3> (last August 3, 2018).+(last+August+3,+2018).>Google Scholar
Federal Insurance Office, U.S. Department of the Treasury, “Report on Protection of Insurance Consumers and Access to Insurance” (2016), available at <https://www.treasury.gov/initiatives/fio/reports-and-notices/Documents/2016_FIO_Consumer_Report.pdf> (Last visited August 3, 2018).+(Last+visited+August+3,+2018).>Google Scholar
Insurance Information Institute, Individual Disability Insurance, New Issues Sale, 2015, available at <https://www.iii.org/table-archive/20874> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
Social Security Administration, “2018 Social Security Changes,” available at <https://www.ssa.gov/news/press/fact-sheets/colafacts2018.pdf> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
Social Security Administration, “Survivors Benefits,” (2017), available at <https://www.ssa.gov/pubs/EN-05-10084.pdf> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
American Council of Life Insurers, 2017 Fact Book, at 66, Table 7.1, available at <https://www.acli.com/Industry-Facts/Life-Insurers-Fact-Book> (last visited August 3, 2018).+(last+visited+August+3,+2018).>Google Scholar
Heen, M.L., “Ending Jim Crow Life Insurance Rates,” Northwestern Journal of Law & Social Policy 4, no. 2 (2009): 360-399.Google Scholar
Daniels, supra note 48, at 129.Google Scholar
Meyer, R.B., “The Insurer Perspective,” in Rothstein, M.A., ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge, MA: MIT Press, 2004): 27-47, 35.Google Scholar
I thank Jane Tiller for raising this issue.Google Scholar