Health, Life, and Disability Insurance and Hereditary Nonpolyposis Colorectal Cancer

Abstract

To the Editor:With the discovery of germ-line mutations in the mismatch-repair genes, genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) has become a reality. However, concern about potential genetic discrimination, with regard to insurance and employment, has surfaced among affected individuals and health-care providers. Owing to the lack of information regarding insurance providers' attitudes toward both HNPCC individuals diagnosed with cancer and asymptomatic gene carriers, we decided to assess the insurance-industry attitude regarding the offering of health, life, and disability insurance to HNPCC gene carriers and at-risk family members.An anonymous survey with 14 questions, which included a self-addressed, stamped envelope, was mailed to 1,000 health, life, and disability insurance company presidents. An insurance company database consisting of 5,178 companies was purchased from NAIC Database products. Twenty companies, from each state, that were reported to sell health, life, and disability insurance were chosen randomly from the purchased database. An introductory letter defining HNPCC and the anonymous nature of the study accompanied each mailed questionnaire. Only one mailing was sent. A gene carrier was defined as someone with a germ-line mutation in one of the genes responsible for HNPCC. An at-risk family member was defined as someone who had a 50% chance of carrying the mutation for the defective gene.Of the 1,000 surveys mailed, 4 were not delivered and 79 were returned. Two of the returned surveys were excluded, since they were mailed to different locations of the same company. There were 77 (7.7%) responses to the mailing. Five surveys were returned unanswered, and 6 were returned labeled “not applicable.” Even though we did not know the size of the companies that responded to our survey, we estimated, on the basis of our response rate, that our respondents probably issue $50,000–$100,000 or >$350,000, respectively.With regard to disability insurance, 24 (80%) companies would sell disability insurance to at-risk individuals, 1 (3%) would not, and 5 (17%) would sell it at a higher premium. Gene carriers would be insured by 23 (77%) companies. Three (10%) companies would not sell disability insurance to gene carriers, whereas 4 (13%) would charge a higher premium.Twenty nine (97%) of the disability insurance providers did not require genetic testing prior to insuring a member of an HNPCC kindred. One company did require genetic testing. As shown in table 3table 3, the majority of the life and disability insurance providers would be allowed access to DNA test results.Table 3Access to DNA Test Results, by Type of Insurance ProviderAccess to DNA Test ResultsNo. (%) of Life Insurance ProvidersNo. (%) of Disability Insurance ProvidersYes26 (57)aa20 (67)No14 (30)8 (30)Not applicable2 (4)1 (3)Do not know1 (2)1 (3)Maybe1 (2)…No answer2 (4)…aOne provider stated that they would have access to test results but would decline to insure for economic reasons.In the interpretation of our results, there are several factors that should be kept in mind. Even though our survey was completely anonymous, only 79 (7.9%) of the surveys were returned. This is a limitation of our data set. This could have been improved if we had sent additional mailings. However, because of the anonymity of the survey, the logistics of remailing 1,000 questionnaires was insurmountable, and, hence, the decision was made to mail the survey only once. There were several potential reasons for the poor response rate. Among them was that the survey may have been mailed to an inappropriate insurance company executive, which could have led to fear of identification and of adverse public relations for the company or fear that the company could be held accountable, in the future, for any answers provided. Importantly, we do not claim that the results reflect the whole insurance industry. However, they at least provide some information about insurance-provider attitudes toward HNPCC gene carriers and at-risk individuals.Even though we had a limited response (7.7%) to the questionnaires and the survey respondents probably issue <5% of the insurance policies sold in the United States, our results indicate that the majority of health, life, and disability insurance providers with an opinion would be willing to sell insurance to both HNPCC gene carriers and at-risk individuals. Nevertheless, there were some that would not insure these individuals. The interpretation of our results indicates that there is probably a minority of insurance providers that potentially will discriminate against HNPCC gene carriers and at-risk individuals. It is the latter insurance providers who need to be educated about the condition and the benefits of surveillance and early detection.