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

P. Billings 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).

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).

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42 U.S.C. § 2000ff.

Colo. Rev. Stat. § 10-3-1104; Minn. Stat. § 72A.139; N.Y. Ins. Law § 2615; Or. Rev. Stat. § 746.135.

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.

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).

E.C. Hayden , “Is the $1,000 Genome for Real?” Nature 507, no. 7492 (2014): 294-295.

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).

L. Dong et al ., “Clinical Next Generation Sequencing for Precision Medicine in Cancer,” Current Genomics 16, no. 4 (2015): 253-263.

A. Regalado , “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).

National Institutes of Health, All of Us Research Program, available at <https://allofus.nih.gov> (last visited August 3, 2018).

M. Jain 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.

Insurance Information Institute, Facts + Statistics: Industry Overview, available at <www.iii.org/fact-statistic/facts-statistics-industry-overview> (last visited August 3, 2018).

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).

K. Subramanian 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.

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 A. Prince , “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.

Facts about MIB, available at <http:www.mib.com/facts_about_mib.html> (last visited August 3, 2018).

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.

D. Campion 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.

A. Fuglsang-Frederiksen , “Diagnostic Criteria for Amyotrophic Lateral Sclerosis (ALS),” Clinical Neurophysiology 119, no. 3 (2008): 495-496.

J. F. Gusella and M. MacDonald , “Genetic Criteria for Huntington's Disease Pathogenesis,” Brain Research Bulletin 72, no. 2 (2007): 78-82.

M. Hiseda et al ., “Multiple Primary Cancers in Families with Li-Fraumeni Syndrome,” Journal of the National Cancer Institute 90, no. 8 (1998): 606-611.

H.T. Lynch , “Review of the Lynch Syndrome: History, Molecular Genetics, Screening, Differential Diagnosis, and Medicolegal Ramifications,” Clinical Genetics 76, no. 1 (2009): 1-18.

D. Ford et al ., “Risk of Cancer in BRCA 1-Mutation Carriers,” Lancet 343, no. 8899 (1994): 789-792.

M.K. Metcalfe 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.

S. Chen et al ., “Characterization of BRCA1 and BRCA2 Mutations in a Large US Sample,” Journal of Clinical Oncology 24, no. 6 (2006): 863-871.

J.A. Lowden , “Underwriting Genetic Diseases,” in R.D.C. Brackenridge , R.S. Croxson , and R. Mackenzie eds., Medical Selection of Life Risks, (Swiss Re 5th ed.) (London: Palgrave Macmillan 2006): 99-114.

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J.A. Lowden , “Genetic Risks and Mortality Rates,” in M.A. Rothstein , ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge, MA: MIT Press, 2004): 95-118, 108.

E.R. Copson 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).

X. Li 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.

J.A. Lowden, supra note 31.

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).

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“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).

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Genetic Non-Discrimination Act, R.S.C. 2017, c.3.

Genetic Non-Discrimination Act, R.S.C. R.S.C. 2017, c.3, s.7 par. (a).

H. Roy , “Genetic Non-Discrimination Act: Quebec Questions Law's Constitutionality,” Insurance and Investment Journal (2017), available at <https://insurance-journal.ca/article/genetic-non-discrimination-act-quebec-questions-laws-constitutionality> (last visited August 3, 2018).

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).

Charter of Fundamental Rights of the European Union art 21, 2012 O.J.C. 326/391.

Y. Joly et al ., “Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?” (2017), available at <http://ssrn.com/abstract=2911199> (last accessed August 3, 2018).

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N. Daniels , “The Functions of Insurance and the Fairness of Genetic Underwriting,” in M.A. Rothstein , ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge, MA: MIT Press, 2004): 119-145, 124.

For an argument in support of “rational discrimination” as compared to the current U.S. status quo, see A. Prince , “Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?” Nebraska Law Review 94, no. 3 (2018): 624-687.

42 U.S.C. § 300gg-300gg-2.

Patient Protection and Affordable Care Act of 2010, 42 U.S.C. § 18001 et seq. (2010).

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.”

M.A. Rothstein , “Policy Recommendations,” Genetics and Life Insurance: Medical Underwriting and Social Policy, M.A. Rothstein , ed. (Cambridge, MA: MIT Press, 2004): 233-265, 234.

K. Aktan-Collan , “Predictive Genetic Testing for Hereditary Non-Polyposis Colorectal Cancer: Uptake and Long-Term Satisfaction,” International Journal of Cancer 89, no. 1 (2000): 44-50; L. Lodder 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.

R.C. Green , D. Lautenbach , and A.L. McGuire , “GINA, Genetic Discrimination, and Genomic Medicine,” New England Journal of Medicine 372, no. 5 (2015): 397-399; E. Penziner , “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 J.O. Robinson , “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.

W.R. Uhlmann and S.F. Terry , “Perspectives of Consumers and Genetics Professionals,” in M.A. Rothstein , ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge, MA: MIT Press, 2004): 147-172; M.A. Hall 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.

Vt. Stat. Ann. tit. 18, § 9334(a).

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. H.F.A. Vasen et al ., “A Cost Effectiveness Analysis of Colorectal Screening for Hereditary Nonpolyposis Colorectal Carcinoma Gene Carriers,” Cancer 82, no. 9 (1998): 1632-1637.

C. Tomooda 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.

S. Sugimoto et al ., “Recognition of and Recent Issues in Hereditary Diffuse Gastric Cancer,” Journal of Gastric Cancer 50, no. 8 (2015): 831-843.

S.K. Plevritis 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.

J. Kaiser , “‘Liquid Biopsy’ for Cancer Promises Early Detection,” Science 359, no. 6373 (2018): 259.

I thank Robert Green for this observation.

I thank Paul Billings for this observation.

NHGRI, supra note 2. Much of the concern about employment discrimination is related to employers' role in providing health insurance benefits.

42 U.S.C. § 2000ff.

M.A. Rothstein , J. Roberts , and T.L. Guidotti , “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.

NHGRI, supra note 2.

GINA, supra note 4.

ACA, supra note 51.

M.A. Rothstein , “Predictive Genetic Testing for Alzheimer's Disease in Long-Term Care Insurance,” Georgia Law Review 35, no. 2 (2001): 707-733; D.H. Taylor, Jr., et al., “Genetic Testing for Alzheimer's and Long-Term Care Insurance,” Health Affairs 29, no. 1 (2010): 102-108; C. Zick et al ., “Genetic Testing for Alzheimer's Disease and its Impact on Insurance Purchasing Behavior,” Health Affairs 24, no. 2 (2005): 483-490.

H. Gleckman , “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).

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).

Insurance Information Institute, Individual Disability Insurance, New Issues Sale, 2015, available at <https://www.iii.org/table-archive/20874> (last visited August 3, 2018).

Social Security Administration, “2018 Social Security Changes,” available at <https://www.ssa.gov/news/press/fact-sheets/colafacts2018.pdf> (last visited August 3, 2018).

Social Security Administration, “Survivors Benefits,” (2017), available at <https://www.ssa.gov/pubs/EN-05-10084.pdf> (last visited August 3, 2018).

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).

M.L. Heen , “Ending Jim Crow Life Insurance Rates,” Northwestern Journal of Law & Social Policy 4, no. 2 (2009): 360-399.

Daniels, supra note 48, at 129.

R.B. Meyer , “The Insurer Perspective,” in M.A. Rothstein , ed., Genetics and Life Insurance: Medical Underwriting and Social Policy (Cambridge, MA: MIT Press, 2004): 27-47, 35.

I thank Jane Tiller for raising this issue.