Am. J. Hum. Genet.

51:785-792, 1992

A Survey of State Insurance Commissioners Concerning Genetic Testing and Life Insurance
Jean

E. McEwen, Katharine McCarty, and Philip R. Reilly

Division of Social Sciences, Ethics and Law, Eunice Kennedy Shriver Center, Waltham, MA

Summary Rapid advances in genetic testing have stimulated growing concern about the potential for misuse of genetic data by insurance companies, employers, and other third parties. Thus far, reports of genetically based discrimination in life insurance have been anecdotal. Reasoning that state insurance commissioners were likely to be aware of (1) the extent of current use of and interest in genetic tests by life insurers and (2) consumer complaints about insurance being denied because of genetic condition or because of genetic test results, we conducted a survey of that group. We received responses from 42 of the 51 jurisdictions. Our results suggest (1) that those who regulate the life insurance industry do not yet perceive genetic testing to pose a significant problem in how insurers rate applicants, (2) that life insurers have much legal latitude to require genetic tests, and (3) that so far few consumers have formally complained to commissioners about the use of genetic data by life insurers.

Introduction

Dramatic advances in molecular biology have transformed the vision of identifying and sequencing every gene in the human genome into a realistic possibility. Now in its third year of existence, the National Center for Human Genome Research (NCHGR) and its sister agency, the Department of Energy (DOE), will in fiscal 1993 spend over $100 million dollars on the human gene mapping project. Work conducted under their auspices, as well as other scientific projects, suggest that a very large number of disease-causing genes will rapidly be identified. Recent examples of such success include identification of the genes involved in muscular dystrophy, cystic fibrosis, Marfan syndrome, neurofibromatosis, fragile-X syndrome, myotonic dystrophy, and a host of less-well-known entities. Once a disease gene is mapped and cloned, it is a relatively straightforward task to develop a DNAbased test to identify affected individuals or to detect persons or fetuses who will become affected. In the
Received March 23, 1992; revision received May 18, 1992. Address for correspondence and reprints: Jean E. McEwen, J.D., Eunice Kennedy Shriver Center, Division of Social Sciences, Ethics and-Law, 200 Trapelo Road, Waltham, MA 02254.

o 1992 by The American Society of Human Genetics. All rights reserved. 0002-9297/92/5104-0012$02.00

case of recessive disorders, it is possible to develop tests to identify carriers. Unquestionably, we have entered an era in which a huge number of new genetic tests will become available. The techniques of molecular biology, combined with those of genetic epidemiology and clinical diagnosis, also hold much promise for understanding genetic components of complex disorders such as cancer, heart disease, dementia, and schizophrenia. One can envision a new era in preventive medicine when physicians and genetic counselors are routinely informed about a patient's profile of genetic risks and counsel the patient on how to reduce the likelihood of becoming affected with a genetically influenced disorder. Our power to test persons for genetic diseases and genetic traits has stimulated much concern that genetic information could be abused in nonclinical contexts such as in insurance practices, hiring decisions, and school evaluations. While stigmatization and discrimination have always been part of the burden borne by the chronically ill, genetic testing raises the specter of disenfranchisement based on the perception that one might become ill or someday bear a child with a significant medical problem. Concerns about "genetic discrimination" first came under serious discussion in the mid 1980s. For exam785

786

McEwen et al.
could life insurers legally request, and what uses could

ple, at its 1986 annual meeting, The American Society of Human Genetics held a symposium entitled "Genetic Discrimination: Rights and Responsibilities of Tester and Testee" (Social Issues Committee 1986). More recently, the commitment by the NCHGR to devote more than 5% of its budget to exploring the ethical, legal, and social issues raised by its work, as well as the DOE's decision to devote some 2% of its genome project budget to similar issues, indicate that the scientific community recognizes the importance of these concerns. Similarly, the Office of Technology Assessment, the Institute of Medicine, and the National Research Council all have recently studied or are currently studying various social policy issues raised by advances in genetic testing. The core, recurring theme in each ofthese studies focuses on the possible clash between the interests of third parties in genetic information and an individual's right to privacy. The central question is, Who should have access to genetic information? Those who perceive a growing risk that genetic data will be abused have focused on the insurance industry. Thus far, evidence of genetic discrimination by insurers has been anecdotal (Billings et al. 1992). The American Society of Human Genetics and the Joint NIH-DOE Working Group have created committees to work with members of the insurance industry to understand current relevant underwriting practices and to shape policy development. Most private health insurance in this nation is purchased through employment-based group policies, while most life insurance is purchased by individuals. We therefore reasoned that those who underwrite life insurance might be more interested than health insurers or even disability insurers in using genetic data in reaching their decisions and might have better-defined positions on the issue. We further reasoned that, because the sale of insurance is regulated, state insurance commissioners could be an important resource in studying both the scope of genetic information used in underwriting and the prevalence of genetic discrimination. We conducted a survey to determine their perceptions concerning the use of genetic data by life insurers.
Material and Methods A survey document was developed to seek information from the insurance commissioners in 50 states and the District of Columbia, concerning the following topics: (1) what types of "genetic information" (a term that was not further defined in the questionnaire)

they make of that information; (2) whether the respondents had received complaints, by consumers, of genetically based discrimination by life insurers; (3) whether the respondents would permit life insurers to use tests to identify persons who are at increased risk for late-onset genetic diseases; and (4) whether the respondents were aware of any proposed or existing legislation in their states that limited the use of genetic data by insurers. Some topics were explored using brief case studies. The survey questionnaire was developed based on numerous conversations with geneticists and persons working in the insurance industry and after a review of the relevant literature. A draft of the survey document was reviewed by an expert in survey research. The questionnaire was mailed in November 1991. A follow-up letter was sent to those who had not responded by the date requested in the survey. These mailings yielded 37 responses. Shortly after the second mailing we conducted a limited telephone survey (excluding the case studies) in an attempt to reach representatives of those commissioners' offices that had not responded. This yielded an additional five responses, for a total of 42 responses and an overall response rate of 82.4%. In the analysis of the data, the denominator used was the total number of respondents who answered a particular question (42, unless otherwise indicated). Some questionnaires were completed by the commissioners themselves, but most were completed by staff persons. A sample of the questionnaire will be provided on written request.
Results

As summarized in table 1, five (11.9%) of the respondents surveyed indicated that they were aware of life insurance companies, in their states, that in their underwriting use genetic information obtained from the medical records of applicants or policyholders. Five (11.9%) responded that they were unaware of any life insurers using genetic information obtained from records, and 32 (76.2%) stated that they did not know. Only one (2.4%) of the respondents, the Missouri respondent, indicated that it was aware of any life insurers that are directly conducting genetic testing at present. Nine (21.4%) stated categorically that no life insurers were doing such testing, and the remaining 32 (76.2%) did not know. Several respondents that stated that they were unaware of genetic

Survey on Genetic Data and Life Insurance

Table I
Insurance Commissioners' Awareness of Life Insurers' Use of Genetic Information

787

PERCENTAGEa

Yes

No

Don't Know

Commissioners aware of insurers using genetic information from medical records of applicants or policyholders ............ 11.9 Commissioners aware of insurers directly conducting genetic testing ................. 2.4 Commissioners to whom insurers have expressed interest in using genetic information
............................

11.9
21.4
80.9

76.2

76.2
14.3

4.8

Commissioners to whom insurers have expressed concern about adverse selection by persons at risk for genetic disease ... Commissioners who have received complaints from consumers about alleged genetic discrimination .........................
a

2.4

80.9 7.1 88.0

16.7

4.8

Of 42 insurance commissioners surveyed.

testing qualified their answers by noting, for example, that, while no such activity had been detected through policy filings or complaints, they suspected that some insurers might be doing this. Only two (4.8%) of the respondents, the Missouri and Texas respondents, had been contacted by life insurers expressing an interest in using genetic information in underwriting. Only one (2.4%) of the respondents, the Wisconsin respondent, had had contact with life insurers expressing concern about adverse selection (the practice of consumers buying insurance coverage in anticipation of developing a particular genetic disease) by persons at genetic risk. That respondent indicated that insurers in Wisconsin are concerned that they will be prohibited from (1) rating (the practice of matching premium to perceived risk) a person after the symptoms of a disease are manifested or (2) securing any results of genetic testing that a person has already undergone. Thirty-seven (88.0%) of the respondents had, during the preceding year, received no complaints from applicants or policyholders about alleged discrimination by life insurers in connection with genetic information or testing. Two (4.8%) of the respondents had, however, received complaints. The Montana commissioner had investigated one such complaint but had not prepared a final report on it. In Washington State, between two and five such complaints had been filed, but these had not been investigated.

Respondents were asked to read a series of case studies involving various genetic conditions and to indicate for each one whether life insurers in their state could, under existing law and practice, (1) refuse to insure the individual described, (2) charge him or her a higher than standard premium, and/or (3) include in the policy an exclusion relating to the disease in question. For each case study, respondents were asked to assume that the individual in question had applied for a $250,000 whole life policy. The responses to this series of questions are summarized in table 2. These results are based on 32 responses because the questions were not asked of those who were only interviewed by telephone and because the answers on several of the written responses could not be interpreted. In one case study, respondents were asked to consider the situation of a 23-year-old single white woman with spina bifida, described as a congenital defect of the lower spine, which rendered her unable to walk without crutches and to have bladder problems. Twenty-two (68.8%) of the respondents indicated that life insurers in their state would be able to refuse coverage to such an individual; 24 (75.0%) stated that life insurers in their state could charge a higher premium; and seven (21.9%) responded that life insurers in their state could provide an exclusion for death resulting from that condition. Between 20% and 25% of the respondents indicated that they did not know whether life insurers in their state would be able to take any of these actions. In a second case study, respondents considered the case of a 34-year-old white man whose father died of Huntington disease (HD), an adult-onset, incurable, progressive fatal disease of the nervous system. Respondents were told that this individual was at 50% risk for having the gene that causes the disease, that he had no symptoms, and that he preferred not to take an available test to determine whether he lhad the gene. Eighteen (56.3%) of the respondents indicated that insurers could refuse coverage to such a person; 19 (59.4%) stated that insurers could charge a higher premium; and 5 (15.6%) responded that insurers could provide an exclusion. More than one-third of the respondents indicated that they did not know what insurers in their state would be able to do. Another case study involved a 22-year-old white, married, childless man with cystic fibrosis, described as a genetically caused lung disease in which the median life expectancy is 28 years. In this case, 24 (75.0%) of the respondents indicated that insurers could refuse coverage; 26 (81.3%) stated that insurers

788
Table 2
Respondents' Opinions as to the Ability of Life Insurers to Refuse Coverage, Charge Higher Premiums, or Provide Exclusion for Applicants with Selected Conditions

McEwen et al. Two case studies, involving breast cancer and coronary artery disease, yielded a response pattern that diverged somewhat from the others. The breast cancer case study asked respondents to consider a 30-year-old white, married, childless woman whose mother and maternal aunt had both died of breast cancer before age 45 years. Here, 14 (43.8%) of the respondents indicated that insurers could refuse coverage; 16 (50.0%) stated that insurers could charge a higher premium; and 5 (15.6%) responded that insurers could provide an exclusion. The coronary artery disease case study, which involved the situation of a 35year-old white, married, childless man whose parents had both died of the disease in their SOs, yielded the same response pattern. For both case studies, about one-third of the respondents indicated that they did not know what insurers in their state could do. A final case study asked respondents to consider the case of a 27-year-old single black woman with sickle cell anemia, described as a genetically determined blood disorder that is burdensome, but compatible with a life span of about 50 years. In this instance, 22 (68.8%) of the respondents indicated that insurers could refuse coverage; 25 (78.1%) stated that insurers could charge a higher premium; and 8 (25.0%) responded that insurers could provide an exclusion. Here, about one-fifth ofthe respondents indicated that they did not know which, if any, of these practices would be permitted in their state. Some of the respondents who replied that these actions would not be allowed appear to have been influenced by the fact that sickle cell anemia primarily affects blacks. For example, the Maryland respondent, who responded to all the other case studies with "Don't Know," indicated that insurers would be precluded from considering sickle cell anemia in underwriting, referring specifically to a state statute that prohibits consideration of race as an underwriting criterion. Respondents in a number of states noted that, except for the laws (unfair insurance practices acts) that prohibit discrimination among similarly situated individuals in the same class and with the same life expectancy, there is no limit on life insurers' ability to use particular factors in underwriting. For example, the New Jersey respondent, pointing out that no law requires the guaranteed issuance of life insurance and that insurers may elect not to issue a particular policy so long as it is not done in an "unfairly discriminatory" manner, stated that the term "unfairly discriminatory" in its statute is not synonymous with "nondiscriminatory." However, respondents for two states, the Minnesota and New York respondents, suggested that

PERCENTAGEa

Don't
CONDITION AND OPTION
A 23-year-old single white woman with spina bifida (a congenital defect of the lower spine that renders her unable to walk without crutches and that results in bladder probYes
No
Know

lems):
Refuse............................................
68.8

Higher premium
Exclusion

.............................

75.0
21.9

.............................

9.4 3.1 53.1

21.9 21.9 25.0

A 34-year-old white man whose father died of Huntington disease (an adult-onset, incurable, progressive fatal disease of the nervous system). He is at 50% risk for having the gene but has no symptoms. Although a test is available, he prefers not to take it:

Refuse ........ Higher premium

Exclusion

..................... .............................

56.3 59.4
15.6

.............................

9.4 6.3 50.0

34.4 34.4 34.4

A 22-year-old white married childless man with cystic fibrosis (a genetically caused lung disease with a median life expectance of 28

years): Refuse ......... Higher premium

Exclusion

....................

.............................

75.0 81.3
31.3

.............................

6.2 0 46.9

18.8 18.8 21.9

A 30-year-old white married childless woman whose mother and maternal aunt both died of breast cancer before age 45 years: ..................... 43.8 Refuse ........ Higher premium ............................. 50.0
Exclusion
.............................

15.6

25.0 15.6 50.0

31.3 34.4 34.4

A 35-year-old white married childless man whose parents both died of coronary artery disease in their 50s: ..................... 43.8 Refuse ........ Higher premium ............................. 50.0
Exclusion
.............................

15.6

25.0 15.6 53.1

31.3 34.4 31.3

A 27-year-old single black woman with sickle cell anemia (a genetically determined blood disorder that is burdensome but compatible with a life span up to about 50 years): .................... 68.8 Refuse ......... Higher premium ............................. 78.1
Exclusion
.............................

25.0

12.5 3.1 53.1

18.8 18.8 21.9

Of 32 respondents.

could charge a higher premium; and 10 (31.3%) responded that insurers could provide an exclusion. About one-fifth of the respondents indicated that they did not know what insurers in their state could do.

Survey

on

Genetic Data and Life Insurance

789

they might demand actuarial data or challenge the validity of an insurer's decision in a case that involved an arguably arbitrary and capricious determination. The Vermont respondent reported that no specific law empowered the commissioner's office to regulate underwriting; it also stated, however, that, if it learned of a practice that it did not condone, it could use the state's unfair-practices provision to attempt a correction.

Respondents were also asked to assume the availability of a highly accurate test for predicting which people would develop any of several genetically influenced diseases and to indicate whether life insurers in their state could require applicants to take any of those tests as a condition for obtaining a $250,000 whole life policy. As summarized in table 3, of the 41 respondents answering this question, 28 (68.3%) indicated that an insurer could require the tests for HD, breast cancer, and Alzheimer disease, and 29 (70.7%) responded that an insurer could require the test for coronary artery disease. Only five (12.2%) responded categorically that insurance companies in their state would not be able to test for any of these conditions, and the remaining respondents indicated that they did not know. Some of the respondents who stated that these predictive tests would be permissible qualified their answers. The New Jersey respondent indicated that its office would allow such testing only on the assumption that the insurer required applicants to take the test on a basis that was not unfairly discriminatory (i.e., if all persons requesting a policy of at least that amount were required to take the test, or if testing was based on medical evidence, including family history). The Pennsylvania respondent, who stated that each of the tests would be permitted, specifically noted the possibility that its office could develop a contrary policy position in the future.
Table 3
Respondents' Opinions as to the Ability of Life Insurers to Require Genetic Tests as a Condition of Insurability

Respondents were also asked questions about their awareness of any legislation in their state designed to regulate whether life insurers may obtain or use genetic information to determine insurability or to set premiums. These results are summarized in table 4. Only three (7.1% ) of the respondents, the Maryland, Montana, and Nevada respondents, indicated their awareness of statutes in their state that explicitly regulate the obtaining or use of such information for underwriting purposes. The Hawaii respondent indicated that its office expects to introduce new bills to the state legislature to regulate genetic information in life insurance underwriting, once the National Association of Insurance Commissioners (NAIC) proposes model laws. However, the NAIC has not yet proposed any such laws and is not formally studying the issue. A somewhat greater number of respondents acknowledged an awareness of state statutes that may indirectly regulate the obtaining or use of genetic information by life insurers, with eight (19.0%) of the respondents indicating that their state had such statutes. The statutes most often cited as indirectly regulating this area were unfair-insurance-practices acts and "information practices" acts (laws that control disclosure of information by the government and certain private agencies). Two (4.8%) of the respondents, the New York and Wisconsin respondents, inTable 4
State Regulation of Life Insurers' Use of Genetic Information

TEST Commissioners aware of existing legislation that explicitly regulates insurers' use of genetic information ........................ Commissioners aware of existing legislation that indirectly regulates insurers' use of genetic information ......................... Commissioners aware of pending bills that will regulate insurers' use of genetic information ............................. Commissioners who have issued regulations on insurers' use of genetic information ........................................ Commissioners who have studied life insurers' use of genetic information ........... Commissioners who have compiled actuarial data relating to specific genetic conditions ............................. 2.4 95.2 2.4
a

PERCENTAGEa Don't Yes No Know

7.1

88.1 4.8

19.0

9.5 71.4

4.8 78.6 16.7

0

PERCENTAGEa

TEST

Yes

No 12.2 19.5 12.2 12.2 19.5 12.2

Don't Know
19.5
17.1

0 100

Huntington disease ............. Breast cancer .................... Alzheimer disease ............... Coronary artery disease .......
a

68.3 68.3 68.3 70.7

2.4

92.9

4.8

Of 41 respondents.

Of 42 insurance commissioners.

790

McEwen et al. many respondents did not consider questions about family history and blood test results to be "genetic." The fact that more than three-quarters of the respondents did not know whether insurers were using genetic information derived from medical records further suggests that considerable uncertainty exists among the respondents about which data should be characterized as "genetic." The survey results also support the inference that most insurers that rely on genetic testing simply avail themselves of test results already contained in medical records, rather than performing such tests themselves. The responses suggest that life insurers do not routinely test for single-gene disorders (perhaps because it is not cost effective to perform such testing); only one respondent was aware that any genetic testing was being directly conducted by insurers in its state. Here again, however, more than three-quarters of the respondents did not know whether insurers were ordering genetic tests, a fact perhaps reflecting uncertainty about the range of tests that can be considered "genetic." It is interesting that only two respondents stated that they had been contacted by insurers who had expressed an interest in using genetic information. This, coupled with the finding that only one respondent had been contacted by life insurers concerned about the prospect of adverse selection due to genetic disease, suggests that insurers have not yet become actively involved in this area. However, the American Council of Life Insurers' recent establishment of a task force to address the role of genetics in underwriting suggests that insurers are thinking about the issue. Respondents for only two states reported that they had received formal complaints from applicants or policyholders about instances of genetic discrimination; it is notable that one of these states, Montana, has now enacted legislation that prohibits life-insurance discrimination based on a specific chromosomal or single-gene condition (Montana 1991). The fact that few formal complaints about genetic discrimination have been lodged does not necessarily mean that such discrimination does not occur; rather, it may indicate only that most consumers either are unaware of how or through whom to complain or sense little possibility of legal redress. Massachusetts, which did not participate in the survey, has recently set up a clearinghouse for complaints and questions about genetically related insurance problems (Pike Institute 1991). The respondents' replies to the six case studies suggest a remarkable absence of legal impediments

dicated that they knew of bills pending in their legislatures that, if enacted, will either explicitly or indirectly regulate the obtaining or use ofgenetic information by life insurers. California, which last year was the site of some controversy about legislation drafted to regulate the use of genetic information in insurance, did not respond to the survey. None of the respondents' offices had issued any regulations or written any policies that provide explicit guidelines on the obtaining or use of genetic information by life insurers. Arizona is the only state whose office was studying the question, and Washington is the only state that had compiled actuarial projections relating to particular genetic conditions. Minnesota indicated that its office has a staff actuary available to conduct studies if needed, and it stated that it will issue regulations if the practice of genetic discrimination becomes a problem.
Discussion

Two findings emerge from this survey: (1) that the offices of most state insurance commissioners seem to have given little consideration to the role of genetics in life insurance underwriting and 2) that the offices of the state insurance commissioners have little information to suggest that genetic data are being used by life insurance companies in a manner that leads consumers to complain of discrimination. The second finding, while not inconsistent with the view that some genetic discrimination may exist in the insurance industry (Billings et al. 1992), suggests that it is far from pervasive. Nevertheless, the absence, in most states, of legal constraints on life insurers' ability to require genetic tests or to rate applicants on the basis of genetic factors suggests that legislative or regulatory reform may be needed. Without it, as advances continue in our understanding of the role that genetics plays in disease, life insurers may be increasingly prone to use genetic data in a manner that unfairly denies certain persons access
to insurance. Although the survey found that few commissioners know of life insurers in their state that are now using genetic information in underwriting, examination of application forms used by major life insurance companies reveals that many already (depending on the age of the applicant and the face amount of the policy) ask questions concerning family history and routinely require tests (e.g., blood tests that measure cholesterol, serum lipids, and glucose) that may reveal genetic data. This suggests that, in answering the survey,

Survey on Genetic Data and Life Insurance

791

should insurers elect to use genetic data in underwriting. Responses to all of the case studies were notable in the extent to which they indicated uncertainty regarding the practices and constraints within individual states, with one-fifth to more than one-third of the respondents in each case study answering "Don't Know" to one or more of the questions. Several respondents specifically indicated that no statute or regulation in their state would permit them to challenge an insurer's decision to require genetic testing as a condition of insurability. Indeed, the survey responses, combined with a thorough study that we have conducted on relevant state legislation (McEwen and Reilly 1992) show that, with the few exceptions mentioned below, the only laws that bear on this area are the generic "unfair insurance practices" laws, which merely prohibit differentiating between individuals of the same class and of equal expectation of life. In light of the general lack of explicit prohibition of the use of genetic data in insurance underwriting, the great majority of respondents indicated that life insurers in their state may legally accord different treatment to applicants suffering from or perceived as being at risk of developing a variety of genetic or genetically influenced conditions. In the cystic fibrosis example, involving a 22-year-old man with a 28-year median life expectancy, it is not surprising that more than three-quarters of the respondents indicated that companies in their state could permissibly refuse coverage and/or otherwise rate the applicant. Indeed, it would be technically impossible to rate such an applicant, as no company would have relevant actuarial data. As the life expectancy of the hypothesized individual is 50 years less than that of his healthy contemporaries, even a decision to rate him highly, rather than deny coverage outright, would probably result in his decision not to purchase the policy, since the premium charged would be prohibitive. The rationale for the responses to the case of a man at risk for HD is less clear. Although over half the respondents indicated that they would allow life insurers to refuse coverage or to charge a higher premium to a 34-year-old applicant who was at 50% risk for having the HD gene but declined to be tested, these percentages are significantly lower than the percentage who said that they would permit insurers to deny coverage to a 22-year-old man with cystic fibrosis. Some respondents may have felt that it would be unfair to treat such an applicant differently when it was unknown whether, in fact, he or she carried the deleterious gene, and they may have been unwilling to assume

that an insurer could legally require an applicant to take the HD test. It is also possible that some respondents had been influenced by the relatively extensive media coverage of HD testing. Here again, however, many life insurers would be unable to offer insurance at any reasonable price to an individual with such a family history, making the distinction between refusal and rating academic. The rationale for the responses to the case study involving spina bifida is difficult to discern. More than two-thirds of the respondents would allow the refusal of coverage to an individual with this condition, and three-quarters would permit charging a higher premium. The finding that some respondents would be as willing to permit an insurer to refuse to insure an adult with spina bifida as to permit an insurer to refuse to insure an adult with cystic fibrosis is difficult to explain, given that a young adult with spina bifida has a significantly higher life expectancy. Respondents were considerably less likely to permit life insurers to give different treatment to people who may be at genetic risk for developing breast cancer or coronary artery disease. In both cases, less than half of the respondents indicated that insurers in their state could refuse coverage, and only half stated that insurers in their state could charge a higher premium. These responses may reflect a perception that breast cancer and coronary artery disease, being more common in the population than are the other conditions hypothesized, are not genetic disorders. This perception may have led some respondents to see a family history of these diseases as being, in and of itself, an insufficiently reliable predictor of longevity. Yet, both a 30-year-old woman whose mother and maternal aunt both died of breast cancer before age 45 years and a 35-year-old man whose parents both died of coronary artery disease in their SOs may face a greater risk of dying prematurely from these conditions than a 23-year-old woman with a low spinal lesion would face of dying from complications of spina bifida. Few respondents indicated that life insurers in their state could employ exclusions relating to any of the diseases in question. This finding is undoubtedly due to the fact that exclusions in life insurance (such as on those who practice hang gliding) are limited under most state insurance codes. However, substantial uncertainty existed about this issue, as well as about the extent to which insurers could exclude or rate applicants, as reflected in the high percentage of "Don't Know" responses to all questions in each of the case studies.

792

McEwen et al.

Just as most respondents appeared willing to allow insurers wide latitude in setting their own criteria for assessing medical risk, they would, assuming the availability of highly accurate tests for certain genetic conditions, also apparently give the insurers great leeway in conducting genetic testing. More than two-thirds of the respondents indicated that insurers in their state could definitely require the predictive tests for HD, breast cancer, Alzheimer disease, and coronary artery disease; only five stated flatly that insurers in their states could not do so. The respondents tended not to differentiate among tests; the vast majority who indicated that they would permit insurers in their state to test for one condition also stated that they would allow them to test for the others. However, the laboratories that do testing for insurers do not perform these tests as a matter of course (particularly the test for HD, which requires the participation of family members). Thus, most insurers interested in an applicant's risk for such diseases would merely inquire of the applicant whether he or she had ever taken the test and, if so, would ask for the results. Responses to the survey questions regarding the extent of relevant legislation and regulation generally confirm the results of our recent survey (McEwen and Reilly 1992) showing that there are few statutes that explicitly regulate how life insurers may obtain and use genetic data. California, the state with the most extensive statutory prohibition of insurance discrimination based on genetic conditions (California Health and Safety Code 1990; California Insurance Code 1990), did not participate in the survey. Few respondents noted the existence of laws that may indirectly regulate the use of genetic information by life insurers. For example, all states have "unfair practices" acts that apply to life insurers and many have "information practices" acts that arguably bear on the use of genetic information by the industry. No respondent indicated that its state had yet issued regulations on genetic testing and life insurance. The Arizona respondent indicated that its office was studying the question, and the Washington State respondent

had made some actuarial projections relating to particular genetic conditions. These findings suggest that insurance commissioners' offices in most states have not yet studied whether specific regulations are needed to guide how life insurance companies may use genetic information in underwriting. In sum, our survey regarding the possible role of genetic testing in underwriting found considerable uncertainty among offices of state insurance commissioners. Our study also discovered that, should life insurance companies wish to make more use of genetic information, they currently have wide latitude to do so. However, the study uncovered little evidence to suggest that those who regulate the life insurance industry perceive (1) that genetic testing currently poses a significant problem in how insurers rate applicants or (2) that consumers are at present filing complaints about the use of such data in underwriting.

Acknowledgments
This work was supported in part by DOE grant DEFG02-91ER61237, MCH grant MCJ-259151-02-0, and Department of Mental Retardation of the Commonwealth of Massachusetts contract 1000-10003-SC.

References
Billings PR, Kohn MA, de Cuevas M, Beckwith J, Alper JS, Natowicz MR (1992) Discrimination as a consequence of genetic testing. Am J Hum Genet 50:476-482 California Health and Safety Code (1990) 150 (f), 1374.7 California Insurance Code (1990) 10143 (a), 11512.95, 10123.3 McEwen JE, Reilly PR (1992) State legislative efforts to regulate use and potential misuse of genetic information. Am J Hum Genet 51:637-647 Montana Code Ann (1991) 33-18-206 Pike Institute (1991) Genetic discrimination in health insurance. Disabil Advocates Bull 6:254 Social Issues Committee (1986) Genetic discrimination: rights and responsibilities of tester and testee. Am J Hum Genet 39 [Suppl]: 15