American Journal of Medical Genetics 120A:359–364 (2003)

Life Insurance and Breast Cancer Risk Assessment:Adverse Selection, Genetic Testing Decisions,and Discrimination

Katrina Armstrong,1,2,3,4,7* Barbara Weber,1,4 Genevieve FitzGerald,1 John C. Hershey,2,5

Mark V. Pauly,2,5 Jean Lemaire,2,5 Krupa Subramanian,2,6 and David A. Asch1,2,3,4,7

1Department of Medicine, University of Pennsylvania School of Medicine, Pennsylvania2Leonard Davis Institute of Health Economics, University of Pennsylvania, Pennsylvania3Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania School of Medicine, Pennsylvania4Abramson Family Cancer Research Institute, University of Pennsylvania Cancer Center, Pennsylvania5The Wharton School, University of Pennsylvania, Pennsylvania6Temple University, Pennsylvania7Center for Health Equity Research and Promotion, Philadelphia Veterans Affairs Medical Center, Pennsylvania

Life insurance industry access to geneticinformation is controversial. Consumergroups argue that access will increase dis-crimination in life insurance premiums anddiscourage individuals from undergoing ge-netic testing that may provide health bene-fits. Conversely, life insurers argue thatwithout access to risk information availableto individuals, they face substantial finan-cial risk from adverse selection. Given thiscontroversy, we conducted a retrospectivecohort study to evaluate the impact of breastcancer risk information on life insurancepurchasing, the impact of concerns about lifeinsurance discrimination on use of BRCA1/2testing, and the incidence of life insurancediscrimination following participation inbreast cancer risk assessment and BRCA1/2testing. Study participants were 636 womenwho participated in genetic counseling and/or genetic testing at a University based cli-nic offering breast cancer risk assessment,genetic counseling, and BRCA1/2 testing be-tween January 1995 and May 2000. Twenty-seven women (4%) had increased and six (1%)

had decreased their life insurance sinceparticipation in breast cancer risk assess-ment. The decision to increase life insurancecoverage was associated with predictedbreast cancer risk (adjusted OR 1.03 for each1% absolute increase in risk, 95% CI 1.01–1.10) and being found to carry a mutation inBRCA1/2 (OR 5.10, 95% CI 1.90–13.66). Con-cern about life insurance discrimination wasinversely associated with the decision toundergo BRCA1/2 testing (RR 0.67, 95% CI0.52–0.85). No respondent reported havinglife insurance denied or canceled. In thiscohort of women, these results indicate thatinformation about increased breast cancerrisk is associated with increase in life insur-ance purchasing, raising the possibility ofadverse selection. Although fear of insur-ance discrimination is associated with thedecision not to undergo BRCA1/2 testing,there was no evidence of actual insurancediscrimination from BRCA1/2 testing.� 2003 Wiley-Liss, Inc.

KEY WORDS: insurance selection bias;genetic screening; BRCA1

INTRODUCTION

As opportunities increase formembers of the public toobtaingenetic tests that canpredict futuredisease, somelife insurers are concerned that their financial solvencywill be threatened unless they have access to the samegenetic information as insurance purchasers [Kinzleret al., 1991; McEwen et al., 1993; Bronner et al., 1994;Miki et al., 1994; Wooster et al., 1995; Schmidt, 1996].For the life insurance market, the threat of adverseselection arises when individuals who learn through

Grant sponsor: National Cancer Institute; Grant number: R01-CA82393; Grant sponsor: American Cancer Society ClinicalResearch Training; Grant number: 9902301; Grant sponsor:Robert Wood Johnson Generalist Faculty Scholar Award; Grantsponsor: Breast Cancer Research Foundation; Grant sponsor:National Cancer Institute; Grant number: CA57601.

*Correspondence to: Katrina Armstrong, M.D., M.S.C.E., 1233Blockley Hall, 423 Guardian Drive, Philadelphia, PA 19104.E-mail: karmstro@mail.med.upenn.edu

Received 3 September 2002; Accepted 11 December 2002

DOI 10.1002/ajmg.a.20025

� 2003 Wiley-Liss, Inc.

genetic tests, for example, that they are at higher riskof early death purchase more life insurance thanthey would have bought without the test, while thosewho learn they are at lower risk reduce their lifeinsurance coverage [Berger and Cummins, 1991; Blackand Skipper, 1994]. Under these circumstances, in-surers will experience a higher overall rate of death perpremiumdollar collected, andwill raise premiums for allbuyers to cover their higher costs. Higher premiumsmay then lead individuals at low or average risk to buyless life insurance andmay evendrive some of the lowestrisk individuals entirely out of the insurance market,increasing the average risk level of those who remaininsured, and further increasing the price of life insur-ance. The result could be a vicious circle, often termed a‘‘death spiral,’’ in which life insurers leave the market(Fig. 1).

The risk of adverse selection associated with genetictest information is likely to be greater for life insurancethan for health insurance. More than 90% of privatehealth insurance contracts in the US provide benefitslimited to health care costs incurred, are obtainedthrough an employment-based group that offers a limit-ed menu of choices, and offer little room to increasecoverage in response to individual risk information[Wilcox, 1997]. In contrast,most life insurance contractsare sold individually with premium schedules that areguaranteed for years in advance and with the opportu-nity to increase coverage [Black and Skipper, 1994;Hartwell, 1998]. Furthermore, although an insurancepurchaser can cancel the policy at any time, the lifeinsurer is required to renew coverage at the prespeci-fied premium schedule, leading to extended financialexposure.

Many life insurance industry representatives in theUS and UK point to the theory of adverse selection tosuggest that all genetic information available to indivi-duals be similarly available to insurers, so that they canprice individual policies appropriately [McEwen et al.,1993; Schmidt, 1996]. At the same time, consumergroups struggle to increase the privacy protection ofgenetic information [Gostin, 1991; McEwen, 1992;Natowicz et al., 1992; Ostrer et al., 1993]. These groupsvoice concerns that insurance industry access to genetic

information will lead to discrimination of the very kindthe insurance industry argues may be necessary tomaintain its solvency. Consumer groups also argue thatconcerns about insurance discrimination may preventindividuals from pursuing genetic testing, therebyhindering them from adopting measures that mayreduce disease risk.

The language of this debate is confusing because theword ‘‘discrimination’’ is often used neutrally by econ-omists and actuaries, but is interpreted negatively bythe public. Moreover, actuarially fair differences in lifeinsurance pricing are often tolerated (e.g., lower pre-miums for women vs. men), but sometimes seen associally inappropriate (e.g., higher premiums forAfrican-Americans vs. Caucasians). In the setting of breastcancer risk, actuarially fair life insurance policies wouldcharge more to women with higher risks of dying frombreast cancer. However, the public may believe differ-ential pricing based on breast cancer risk would besocially intolerable, even though actuarially fair. But iflife insurers ignore breast cancer risk information or areprevented from using it, adverse selection might elimi-nate the possibility of life insurance for all, and thusthreaten this important social interest.

Although adverse selection could represent a signifi-cant threat to life insurance markets in the settingwhere genetic risk information is available to indivi-duals but not to insurers, it will be a real threat only ifindividuals who know they are at high risk purchasemore life insurance, or if those who know they are at lowrisk purchase less. Testing for mutations in the twomajor breast cancer susceptibility genes, BRCA1 andBRCA2, provides a useful model for studying adverseselection because it represents a current challenge forboth patients and insurers, and because similar chal-lenges are likely to arise from comparable tests for otherconditions in the future [Hoskins et al., 1995]. Despitethe urgent need to address the tensions between thelegitimate interests of the insurance industry andthe legitimate interests of individual patients, little em-pirical work is currently available to move these discus-sions beyond rhetoric and anecdote. Thus, the purposesof this studywere todetermine the effect of breast cancerrisk information on subsequent life insurance pur-chases, to characterize the influence of concerns aboutlife insurance discrimination on testing for BRCA1/2mutations, and todescribe the incidence of life insurancediscrimination, if any, following participation in breastcancer risk assessment and genetic testing.

METHODS

Study Setting

The Breast Cancer Risk Evaluation Program is amultidisciplinary clinical and research program estab-lished at the University of Pennsylvania in 1994 toprovide breast cancer risk assessment, genetic counsel-ing, and genetic testing for breast cancer susceptibilityto interested individuals. Women may become involvedin this program by attending the clinical risk assess-ment practice and/or through participation in researchFig. 1. Adverse selection.

360 Armstrong et al.

protocols involving genetic susceptibility testing. Theclinical risk assessment program involves two or threevisits. In the first visit, a detailed family history iscollected and general information is provided aboutbreast cancer risk and BRCA1/2 testing. In the secondvisit, an individualized estimate of breast cancer riskand risk of carrying a BRCA1/2 mutation is providedusing published prediction models, and women whodecide to undergo BRCA1/2 testing submit a bloodsample for analysis. In the third visit, women whounderwent genetic testing are provided with their testresults and further counseling. Women who do notundergo testing at the second visit may return later ifthey decide to pursue testing.Womenwho participate inresearchprotocols outside of the clinical risk assessmentprogram also undergo counseling prior to agreeing toparticipate and prior to receiving their test results. Thiscounseling may be performed by the staff of the clinicalriskassessmentprogramor, forparticipantswho live farfrom the University of Pennsylvania, at local qualifiedfacilities. Because the University of Pennsylvania wasone of the first centers to offer testing for BRCA1/2mutations, the Breast Cancer Risk Evaluation Pro-gram offered a unique opportunity to evaluate the lifeinsurance purchasing decisions of a large cohort ofwomen considering participation in genetic susceptibi-lity testing.

Study Design and Subject Selection

We conducted a mailed survey of two complementarycohorts of individuals: (1) 926 women who had partici-pated in the clinical risk assessment program betweenJanuary 1995 and May 2000; and (2) 262 individualswho had been found to have a BRCA1/2 mutationthrough research testing protocols. For both groups,the questionnaire asked about current life insurancecoverage, changes in life insurance made since goingthrough the program, and occurrence of life insurancediscrimination sinceparticipation in risk assessment. Inaddition, for the women who had participated in theclinical risk assessment program, items were includedassessing concerns about life insurance discriminationand its impact on their decisions to undergo BRCA1/2testing. Of the 926 women who had participated in theclinical risk assessment program, 28 were excludedbecause theyhadpreviously requestednot to participatein further research, 53 because their questionnaireswere returned for incorrect addresses, and 11 becausethe intended recipient had died. Of the remaining 834individuals, 574 returned questionnaires for a responserate of 69%. Of the 262 individuals who had been foundto have a mutation through research testing protocols,135 completed questionnaires, 10 had died orwere too illto complete the questionnaire, 40 were no longer at therecorded mailing address, and 1 was in the process ofgetting his test results for a response rate of 55%. Fromthe 135 individuals who returned completed question-naires, 47 had been included in the prior survey, 9 weremen and 17 did not know the results of their BRCA1/2test at the time of the survey—leaving a total of 62additional BRCA1/2 mutation carriers. Thus, there

were a total of 636 women in the final study cohort.The study protocol was approved by the InstitutionalReview Board of the University of Pennsylvania.

Statistical Analysis

All variables were analyzed using descriptive statis-tics to assess data quality, data distribution, and theneed for data transformation. In general, statisticalanalyses were conducted first within the clinical riskassessment cohort and then within the entire studycohort (clinical risk assessment participantsþmutationcarriers identified through research participation).Because Mantel–Haanszel tests of homogeneity sug-gested that the results did not differ statistically (P-values>0.10) between these two approaches, the re-sults for the entire cohort were presented. Because theresearch participants were not asked about the effect ofconcerns about insurance discrimination on testingdecisions, these analyses were restricted to the clinicalrisk assessment cohort. The predicted lifetime risk ofbreast cancer for each subject without aBRCA1/2muta-tion was calculated from prediction tables developedfrom the Cancer and Steroid Hormone Study, a large,population based case-control study of breast cancer[Claus et al., 1994]. These tables provide breast cancerrisk estimates up to age 80 according to the familyhistory of breast cancer. The predicted lifetime risk ofbreast cancer for women with a BRCA1/2mutation wasestimated to be 85% [Easton et al., 1995]. Associationsbetween concern about insurance discrimination andthe testing decision were examined using the Wilcoxonrank-sumtest for concern as an ordered variable and thechi-square test for concern dichotomized between veryimportant/moderately important and a little important/not at all important. Associations between potentialpredictor variables and increase in life insurance wereexamined using independent sample t-test for contin-uous variables and Fisher’s exact test for categoricalvariables. Because predicted risk of breast cancer had askewed distribution, the Wilcoxon rank-sum test wasused in confirmatory analyses. Multivariate analyseswere conducted to adjust the association betweenpotential predictor variables and insurance purchasingfor confounding and effectmodification. AllP-values aretwo sided.

RESULTS

The characteristics of the 636 women in the studycohort are reported in Table I. Two hundred thirty-eightwomen had undergone BRCA1/2 testing and 109 werefound to carry a BRCA1/2 mutation.

Among the subgroup of 574 women who had partici-pated in the clinical risk assessment program, fear of lifeinsurance discrimination was rated as a moderately orvery important factor by 294 participants (55%).Womenwhowere concerned about life insurance discriminationwere less likely to undergo genetic testing (RR 0.67, 95%CI 0.52–0.85). Fear of discriminationwasnot associatedwith breast cancer risk or change in insurance coverage(P>0.24).

Life Insurance and Breast Cancer Risk Assessment 361

Two women reported that they had been told to keeptheir participation in genetic counseling for BRCA1/2testing ‘‘quiet’’ by their life insuranceagent.Of these twowomen, one had tested negative forBRCA1/2mutationsand the other had not undergone testing. One womansaid her application for a new policy had asked abouttesting for genetic susceptibility but she had notcompleted the application process yet. No woman re-ported having life insurance denied or canceled, or anyother negative experience with life insurance coverage,since participating in genetic counseling.

Thirty-seven women (6%) reported changing theirlife insurance coverage since participation in geneticcounseling and/or testing. Twenty-seven women (4%)increased their insurance coverage, 6 women (1%) de-creased or canceled their insurance coverage, and4women (1%) did not provide further information abouttheir change in coverage. Compared to women who didnot increase their life insurance coverage, women whoincreased insurance coverage were more likely to havebeen found to carry a BRCA1/2mutation (RR 2.75, 95%CI 1.5–5.1) and, among women without a breast cancerdiagnosis, had a higher predicted lifetime risk of breastcancer (mean predicted risk 36.1% vs. 24.3%, P¼ 0.01).In addition,womenwhoowned life insurance at the timeof their visit were over eight times more likely to haveincreased their coverage than women who did not ownlife insurance (RR 8.11, 95% CI 1.1–9.2). After adjust-ment for age, race, breast cancer diagnosis, ovariancancer diagnosis, and Ashkenazi background, thedecision to increase life insurance remained associatedwith testing positive for BRCA1/2 mutation (OR 5.10,95%CI1.9–13.7,P¼ 0.003) andowning life insuranceatthe first visit (OR 2.50, 95% CI 1.1–5.6, P¼0.03). In aseparate model of women without a diagnosis of breastcancer, after adjustment for age, race, and Ashkenazibackground, predicted lifetime risk of breast cancer wasalso strongly associated with the decision to increaselife insurance (adjusted OR 1.03 for each 1% absoluteincrease in risk 95% CI 1.01–1.10). The decision toincrease life insurance coveragewas not associatedwith

age, race, Ashkenazi background, education, or employ-ment outside of the home.

Amongwomenwhohad life insurance at the time theyunderwent risk assessment, decreasing life insurancecoverage was not associated with predicted breastcancer risk or results of BRCA1/2 testing (P> 0.10). Ofthe 6 women who decreased or canceled life insurancecoverage, 1 had tested positive for aBRCA1/2mutation,2had testednegative for aBRCA1/2mutation, and3hadnot undergone testing. Decreasing coverage wasnot associated with age, race, Ashkenazi background,education, or employment outside of the home.

DISCUSSION

Genetic testing is a powerful tool for predicting therisk of future disease. The promise of genetic testing fortargeting preventive care to high-risk individuals com-petes with the danger that the same information willlead to discrimination in social and financial settings.Current policy debates focus on this conflict. This studyhas four main findings that offer some of the first em-pirical evidence in this debate.

First, almost one half of the women we studied ex-pressed concern about future life insurance discrimina-tion if they underwent genetic testing. Furthermore,heightened concern was associated with a decision toforgo genetic testing. As women in this group had anaverage breast cancer risk over 20%, genetic testingmight have been able to identify women who would bemost likely tobenefit from interventions to reducebreastcancer risk, such as prophylactic mastectomy andtamoxifen [Fisher et al., 1998; Meijers-Heijboer et al.,2001]. For this sample, then, fear of insurance discrimi-nationmay lead tounderuse of preventionandavoidablecancer deaths.

Second, although concern about insurance discrimi-nation is high, we found no evidence of actual lifeinsurance discrimination among women who partici-pated in risk assessment and genetic testing throughthis clinical program. This information should alleviate

TABLE I. Subject Characteristics

Overalla (n¼ 636)Increased life

insurance (n¼27)Did not change lifeinsurance (n¼599)

Two tailedP-value

Mean age, year (range) 48.4 (20–80) 45.9 (32–74) 48.3 (20–80) 0.27Caucasian (%) 95.8 96.3 95.6 0.86Ashkenazi (%) 26.8 16.0 27.2 0.24Married (%) 80.9 54.5 82.1 0.02Divorced/separated (%) 6.9 36.4 5.5 0.0001College education (%) 83.6 75.0 84.0 0.41Employed (%) 81.7 88.9 81.2 0.56Life insurance (%) 72.4 96.3 73.7 0.01BRCA1/2 testing (%) 38.5 52.0 33.9 0.06BRCA1/2 mutation (%) 17.6 32.0 11.7 0.003Breast cancer diagnosis (%) 34.5 32.3 32.7 0.65Ovarian cancer diagnosis (%) 2.1 0 1.8 —Predicted lifetime breast cancer risk, mean (SD)Including BRCA1/2 mutation carriers 24.6 (19.5) 36.3 (25.1) 24.1(19.0) 0.01Excluding BRCA1/2 mutation carriers 20.0 (10.3) 25.9 (10.6) 19.8 (10.2) 0.02

aIncludes the six women who decreased coverage.

362 Armstrong et al.

some of the concern for women considering undergoingrisk assessment or genetic susceptibility testing.

Third, althoughwomen ingeneralmaybe less likely tocarry personal life insurance than men, 72% of thewomen in our sample were insured [American Councilof Life Insurance, 1996]. Overall, women interested inobtaining information about their risk of heritablebreast cancer are highly educated and employed.Although life insurance purchasingmaybe lower amongwomen in other settings, it is high in this setting.

Fourth, the decision to increase life insurance cover-age is associated with information about the predictedrisk of breast cancer, including BRCA1/2 mutationstatus. This association was not found in the only otherpublished study of life insurance purchasing and breastcancer risk [Zick et al., 2000]. However, this prior studyexamined life insurance coverage (rather than change incoverage) among a single kindred in Utah who had notnecessarily received breast cancer risk counseling.Although the association between breast cancer riskand increasing insurance coverage support insurers’concerns that some women will change their life in-surance in response to breast cancer risk information,the overall impact of these changes remains unclear.Only 4% of women increased their coverage after re-ceiving risk information. The ultimate effect of thisbehavior depends on multiple factors including howsuch changes affect insurance costs and pricing, howchanges in insurancepricingaffect purchasingdecisionsof women at average risk, the level of uptake of genetictesting in the population and the incremental impact ofgenetic information over family history information. Inprior studies using actuarialmodels, we have found thatmost of the actuarially powerful information comes fromfamily history, not genetic test results. [Subramanianet al., 1999; Lemaire et al., 2000]. With the widespreaddistribution of software programs to assess the risk ofbreast cancer by the pharmaceutical company market-ing tamoxifen, many more women are likely to receiveinformation about their risk of breast cancer in the nextseveral years than are likely to participate in BRCA1/2testing [Armstrong et al., 2000]. Currently, life insurersask about family history and other factors related tobreast cancer risk, but it is not known whether or howthat information is used for underwriting [McEwenet al., 1993; Lemaire et al., 2000]. Little is known aboutcurrent levels of uptake of predictive genetic tests in thegeneral population and determining the level of uptakethat would result in significant adverse selection willrequire further actuarial modeling. Perhaps most im-portantly, if genetic or other types of risk assessmentlead to use of effective cancer risk reduction interven-tions, the threat of adverse selectionwill be replacedbyawelcome reduction in overall mortality attributable torisk assessment and genetic testing, benefiting patientsand insurers alike.

This study is subject to several limitations. We usedpatients drawn primarily from a single clinical site,although one that draws women from across the Mid-Atlantic and lower New England. We relied on self-reported information regarding insurance purchasing.Although our small sample size limits the precision of

some of our estimates, it was sufficient to demonstratestatistically and clinically significant associations be-tween breast cancer risk and insurance purchasing.Because of the small sample, we cannot provide reliableestimates of the magnitude of change in life insurancebenefit amount among those who changed policy size.Womenwho entered this programearlier havehadmoreopportunity to change their life insurance coverage, andthose who entered late may change them in the future.For this reason, point estimates likely understate thechanges that would be observed over time. We did notevaluatea comparable groupofwomenwhodidnot enterthe Breast Cancer Risk Evaluation Program. Some ofthese women may have forgone breast cancer riskevaluation because of their concerns about subsequentinsurance discrimination. Thus, we do not have a com-parison group against which to assess the changes ininsurance purchasing exhibited by our overall sample;nevertheless, within our sample, insurance changeswere associated with higher risk of breast cancer.

Despite these limitations, this study demonstratesthat some women concerned about breast cancer riskincorporate that information into their life insurancepurchasing decisions and that concern about insurancediscrimination is an important barrier to the use ofgenetic testing despite the absence of evidence thatsuch discrimination actually occurs. Further study isneeded todetermine themagnitudes of these effects, andtheir impact both on genetic testing and on life in-surance markets. These studies will require larger andmore longitudinal assessments of behavior andwill needto be combined with actuarial models of the impact ofthese behaviors on life insurance pricing and subse-quent demand.

ACKNOWLEDGMENTS

Sankey Williams, M.D. provided valuable help inearlier drafts of this manuscript. Dr. Armstrong is sup-ported by American Cancer Society Clinical ResearchTraining Grant 9902301 and a Robert Wood JohnsonGeneralist Faculty Scholar Award. Dr. Weber is sup-ported by the Breast Cancer Research Foundation andNational Cancer Institute Grant CA57601.

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