Impact of Breast Cancer Genetic Testing on Insurance Issues

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1 Impact of Breast Cancer Genetic Testing on Insurance Issues Prepared by the Health Research Unit September 1999

2 Introduction The discoveries of BRCA1 and BRCA2, two cancer-susceptibility genes, raise serious ethical, legal, social and economic issues. In November 1993, the National Forum on Breast Cancer issued a recommendation to develop a policy with respect to genetic screening and to consider whether there should be legislated protection for women in such areas as privacy, insurance and misuse of data. The Canadian Breast Cancer Research Initiative also recently identified this as an important priority are of research. Objectives The objective of this study was to assess current knowledge, perceptions, attitudes and practices of women with a family history of breast or ovarian cancer regarding issues that pertain to breast cancer genetic testing and insurance. Methods This study sampled all women who attended the St. John s Breast Screening Clinic from January 1, 1999 to June 30, 1999 who indicated a first degree family history of breast or ovarian cancer on the clinic questionnaire form. Women who had been diagnosed with breast or ovarian cancer were excluded. A nurse from the clinic contacted each eligible woman by telephone, confirmed her eligibility, explained the survey purpose and asked for consent. If verbal consent was given, a written consent form was mailed to the participant with return of the signed form constituting informed consent. Upon receipt of consent, the interviewer telephoned the participant and administered a questionnaire. 1

3 Sampling There were 242 potentially eligible women. We obtained a 55.8% response rate with 135 women participating in the study. Reasons for Not Participating Frequency Percentage Not Interested (too busy, too emotional) % Didn t Return Consent % Refused at Letter (Sick, Had to go out of town, husband % sick, husband died) Away (Moved or On Holidays during study) % Couldn t Contact 5 4.7% Unable due to Illness (throat problem, lung cancer, just had 5 4.7% surgery, neck injury) Unable due to communication (hard of hearing, blind, 5 4.7% can t speak English well) Spouse Sick 4 3.7% Wrong Number 3 2.8% Not Eligible (had ovarian cancer, no breast or ovarian 2 1.9% cancer in family) Number Not In Service 2 1.9% Deceased 2 1.9% Total % 2

4 Demographics The age of participants ranged from 51 to 73 years, with an average of 59.2 years. Marital Status Frequency Percentage single, never married 7 5.2% single, divorced / separated % single, widowed % married / cohabiting % Total % Most women were married. All had completed at least elementary school, with 87% having at least high school. Highest Level of Formal Schooling Frequency Percentage elementary school % high school % community college % university % Total % Annual Household Income before Taxes Frequency Percentage under $25, % $25,000 - $49, % $50,000-$74, % over $75, % Total % 1 Five participants refused to answer Thirty-seven percent of participants had a household income of $50,000 or more. 3

5 Present Activities Frequency Percentage Homemaker % 1 Retired % 1 Volunteer Work % 1 Employed, Outside the Home % 1 Employed, Working from Home 9 6.7% 1 Caring for Someone Full-time 8 5.9% 1 Unemployed 7 5.2% 1 On Disability / Recovering from Illness 6 4.4% 1 Attending School 0 0.0% 1 1 Participants were asked to select all activities that apply Almost all of these women (95%) considered themselves to be homemakers. Thirty-two percent were employed outside the home. Most participants were born in Canada (94%), with others born in England, Ireland, the Netherlands, UK, Scotland, and United States. When asked what ethnic or cultural group they considered themselves belonging to, 97% said English, with others saying Celtic, Dutch, Irish, and Scottish. Religion Frequency Percentage Roman Catholic 56 42% Anglican 38 28% United Church 22 16% Salvation Army 6 4% Presbyterian 4 3% Pentecostal 3 2% Baptist 1 1% Protestant 1 1% Seventh Day Adventist 1 1% None 3 2% 4

6 Family Members with Breast or Ovarian Cancer Breast Cancer Genetic Testing and Insurance Most first degree relatives with breast or ovarian cancer were sisters or mothers of the participant. There were 19 participants with two first degree relatives, and five who ve had three first degree relatives. The average age of first degree relatives when they were diagnosed was 56 years (range 25-88). Most second degree relatives with breast or ovarian cancer were aunts of the participant. There were two women with two second degree relatives, three with three second degree relatives, and two with four second degree relatives who have had breast or ovarian cancer. The average age of second degree relatives when they were diagnosed was 53.5 years (range 20-85). The total number of relatives who have had breast or ovarian cancer ranged from 1 to 5. Ninety of our participants had only one relative with breast or ovarian cancer, 26 had two, 13 had three, one had four, and five participants had five relatives with breast or ovarian cancer. 5

7 Supplemental Health, Disability, and Life Insurance Breast Cancer Genetic Testing and Insurance Most participants have supplemental health and life insurance, while only 26% have disability insurance. Four percent did not know whether or not they had disability insurance. Twenty-five participants have all three types of insurance, and nine participants didn t have any. Most participants with supplemental health or disability insurance had a group policy (90% and 94%, respectively), with the remaining being individual. Participants with life insurance were split fairly equally between group policy (42%) and individual (46%). Ten participants with life insurance have both group and individual. Obtaining Insurance Supplemental Health n = 115 Disability n = 35 Life n = 85 Through your work place 47 (41% 1 ) 21 (60% 1 ) 25 (29% 1 ) Through your spouse s/partner s work place 49 (43% 1 ) 11 (31% 1 ) 11 (13% 1 ) Through professional organizations 0 (0.0% 1 ) 1 (2.9% 1 ) 1 (1.2% 1 ) Individually 11 (10% 1 ) 1 (2.9% 1 ) 39 (46% 1 ) Other 8 (7.0% 1 ) 1 (2.9% 1 ) 9 (11% 1 ) 1 percentage of those with insurance Most participants get their supplemental health insurance or disability insurance either through their own work place or through their spouse s work place. Less than half of those with life insurance obtain this insurance through the work place. 6

8 Asked About Family History in Application for Insurance Supplemental Health n = 115 Disability n = 35 Life n = 85 Yes 14 (12% 1 ) 3 (9% 1 ) 26 (31% 1 ) No 79 (69% 1 ) 26 (74% 1 ) 45 (53% 1 ) Don t know 22 (19% 1 ) 6 (17% 1 ) 14 (17% 1 ) 1 percentage of those with insurance Most participants with insurance said they were not asked about family history in their application. However, many participants didn t know if they were asked or not. Eleven participants (8%) had been asked to pay higher premiums for drug plans, life insurance, health insurance, or long term disability. Many stated the reason as being either a health condition (high cholesterol, heart condition, diabetes, etc.), or a usual increase in insurance rates due to age. One participant stated that she had to pay a higher premium because she was a smoker. No participants had been asked to pay higher premiums due to a family history of breast cancer. Children of Participants Participants Children With Life Insurance Frequency Percentage No Children 9 7% At Least One Child With Life Insurance 81 60% No Children With Life Insurance 15 11% Don t Know 30 22% Ninety-three percent of our participants have children. Women with life insurance tend to have children with life insurance. For those women with children, 74% with life insurance have a child with life insurance compared to 48% for those women with no life insurance. 7

9 Knowledge of Genetic Testing Only 36% of participants had heard of the alterations in the BRCA1 and BRCA2 genes before conducting the interview. Television was the most common source of information about the genes. Source From Which Participant First Heard About The Gene Alterations Frequency Percentage 1 Television 23 46% A Family Member 12 24% Magazine 5 10% Newspaper 4 8% A Friend 2 4% My Doctor 1 2% Cancer-Specific Literature 1 2% Cancer Patient 1 2% The Internet 1 2% Total % 1 Percentage of those who have heard of the alterations in the BRCA1 and BRCA2 genes before 2 One participant said both a family member and a cancer patient Three participants said that someone had talked to them about getting tested for the gene alteration (a gynaecologist, a sister with cancer, a cousin). Two participants stated that someone had talked to them about the issue of genetic testing and how it could affect their insurance (a gynaecologist, a friend with cancer). Nine percent of women had considered the impact genetic testing might have on insurance status before the interview. Their thoughts were either negative or uncertain. 8

10 Not At All Concerned Extremely Concerned Women were asked to rate their concern about the threat of insurance status changing depending on genetic test results. Three participants stated that this did not apply to them either because they did not intend to undergo genetic testing for BRCA1 and BRCA2 or they did not have insurance. One participant did not respond to this question as she had not given it any previous thought. Most participants indicated strong feelings one way or the other about this issue with 18% extremely concerned while 30% were not at all concerned. Half of the participants feel they did not have enough information to know if it was likely that they were a carrier of the alterations in the BRCA1 or BRCA2 genes. Five percent felt it was not likely they are a carrier, 43% thought it was somewhat or very likely, while 1.5% (2 participants) thought they are definitely carriers of the alterations. Intend to request genetic testing when it becomes widely available Would prefer anonymous genetic testing if it was available Frequency Percentage Frequency Percentage Definitely Yes 21 16% 52 39% Probably Yes 39 29% 19 14% Probably No 17 13% 21 16% Definitely No 19 14% 31 23% Uncertain 39 29% % Many were undecided about whether they would seek genetic testing if it becomes widely available. Most (53%) would prefer anonymous testing. 9

11 Motivations for Testing The main reason women felt they would want to get tested for BRCA1 and BRCA2 was to ease their thoughts, relieve uncertainty and be reassured. To increase screening or have preventative surgery was also a very significant reason given. Seventy-three percent felt that contributing to research was an important reason for being tested. Reasons To Get Tested Not at all / Somewhat Important Moderately / Very Important To ease my thoughts, relieve uncertainty, be reassured 11% 89% To increase screening or have preventative surgery 14% 86% To contribute to research 27% 73% A physician or family member has asked me to 34% 66% To make decisions about the future 58% 42% To make it easier to get affordable insurance, in case I test negative 69% 31% Reasons Not To Get Tested Testing does not contribute to prevention 71% 29% To possible impact on my insurance 72% 28% It may be distressing to cope with results 87% 13% My genetic test may influence my or my children s susceptibility to discrimination 91% 9% Problems with testing procedure 93% 7% Due to cultural or religious reasons 98% 2% I am presently involved in too many other studies involving breast cancer 100% 0% I may have difficulties with immigration 100% 0% The two most significant reasons not to get tested were the possible impact on insurance, and the fact that testing does not contribute to prevention. In general, women rated reasons not to get tested as far less important than they rated positive reasons for getting tested. 10

12 Concerns About Insurance Participants were asked to consider the fear of not being able to change insurance companies, not being able to increase their insurance, of having to pay higher premiums or of losing their insurance. They said this was most likely to affect their ability to cope with the threat of cancer and get on with their lives (53%). Less than half of participants (42%) felt this would affect their decision regarding whether or not to get tested, and only 33% said it would affect their decision to tell family members or employers in the case of a positive test. Opinions Ninety-four percent of participants agreed that insurance is a necessity and should be available to everyone on an equal basis. Over 90% also felt that there should be regulations on who has a right to know your genetic test results, and that genetic counselling should precede all genetic testing. Most felt life insurance should be operated by private companies and that they have the right to make a profit. Opinion Questions Disagree Agree Genetic counselling should precede all genetic testing 3% 97% Insurance is a necessity and should be available to everyone on an equal basis 6% 94% There should be regulations on who has a right to know your genetic test results 7% 93% I would be willing to pay more taxes or insurance to equalize those with greater risk 12% 88% I would feel confident that my genetic test results would remain confidential were I to get tested today 16% 84% There should be a special consent for the release of genetic results, over and above the general consent in insurance forms for release of medical information 20% 80% Life insurance belongs in the hands of private industry, not government 29% 71% Genetic testing for BRCA1/BRCA2 and insurance is not a big issue in Canada 33% 67% Insurance companies have the right to make a profit from supplemental health, disability, and life insurance 44% 56% Insurance companies have a right to know about health records 70% 30% Twelve percent of participants said they would not be willing to pay out-of-pocket to obtain a genetic test. 11

13 Two participants did not answer, saying that it would depend on the circumstances. Six participants would be will to pay in excess of $1000. Participants were asked to consider the possibility that private health insurance, life insurance, and disability insurance might be much more expensive or difficult to obtain in the case of a positive test. Eight participants (13%) said they would still definitely undergo genetic testing. Almost half of participants (46%) were not sure. Twenty-five percent would probably undergo genetic testing (score 6 to 9). Absolutely Not Definitely Yes Only 16% probably would not undergo genetic testing (score 1 to 4). 12

14 Knowledge of Genetic Testing Participants were given several statements regarding genetic testing, and asked whether they thought each statement was true or false. True False Don t Know A woman who does not have the gene alteration can still get breast or ovarian cancer. 64% 5% 31% A woman with an altered BRCA1/2 gene has to disclose this to her private health, disability, or life insurance company when she applies for insurance or changes her coverage. 25% 11% 64% A women with an altered BRCA1/2 gene cannot get supplemental health, disability or life insurance. 7% 18% 75% Having a mastectomy or having one s ovaries removed will definitely prevent cancer in a woman with the gene alteration. 6% 54% 40% All women who have an altered BRCA1/2 gene will get breast or ovarian cancer. 1% 46% 53% Most participants felt that there was no definite way to tell if a woman will get breast or ovarian cancer. They did not believe the genetic test can give them an absolute answer regarding their possibility of developing cancer. Well over half of participants did not know if a woman with an altered BRCA1/2 could get insurance, or if she has to disclose that she has this altered gene to her insurance company. There are many issues regarding genetic testing that women are not sure about. 13

15 Knowledge of Insurance Participants were given several statements regarding insurance, and asked whether they thought each statement was true or false. True False Don t Know In Canada, all citizens have basic health insurance paid for through taxes. 58% 24% 18% The price of insurance for life, private supplemental health, or long-term disability insurance may be different for people with different health risks. 84% 2% 14% If someone is applying for life insurance directly from an insurance company, that company is allowed to ask for information about: - the applicant s health 94% 0% 6% - the applicant s lifestyle (i.e. smoking, exercise, etc.) 87% 2% 11% - the applicant s family health history 74% 7% 19% - the applicant s genes 19% 25% 56% - what kind of testing was done 34% 17% 49% When you sign an insurance form agreeing to the release of your medical information, this includes the results of HIV tests. 46% 3% 51% Some people are not eligible for individual life, supplemental health or disability insurance. 79% 4% 17% Some of your information obtained by insurance companies is put into a database that other insurance companies can access. 39% 16% 46% When you sign an insurance form agreeing to the release of your medical information, this includes genetic test results. 33% 10% 57% When you sign an insurance form agreeing to the release of your medical information, this includes psychiatric records. 53% 5% 42% When you sign an insurance form agreeing to the release of your medical information, this obliges your doctor to release all tests and reports in your medical file. 62% 7% 31% Most women thought that insurance companies can ask about the applicants health, lifestyle, and family health history. Many did not know if insurance companies were allowed to ask about an applicants genes or what kind of testing was done. Over half did not know if permitting an insurance company to have access to your medical information allowed them to see the results of HIV or genetic tests. Most participants were knowledgeable on insurance issues which did not involve genetic testing. 14

16 Insurance Attitudes Participants were given several statements regarding insurance policies. For each statement, they were asked if insurance companies do or do not use the policy, and if they should or should not use the policy. Statements Do Do Not Should Should Not Charge different automobile insurance rates for male and female drivers under age % 4% 24% 76% Charge different life insurance rates for males and females. 73% 27% 16% 84% Charge different life insurance rates for smokers than for non-smokers. 82% 18% 79% 21% Charge different rates for life insurance based on a person s cholesterol levels. 32% 68% 18% 82% Deny or charge different rates for disability insurance for someone who is HIV positive. 76% 24% 38% 62% Deny or charge different rates for life insurance for someone who already has heart disease. 82% 18% 37% 63% Deny or charge different rates for life, disability, or supplemental insurance to someone who has already had cancer. 68% 33% 18% 82% Ask someone applying for life insurance to have a cholesterol test, and if they have already done so, what the results were. 36% 64% 20% 80% Ask someone applying for life insurance about their family history of heart disease or cancer, and then charge different rates. 71% 29% 18% 82% Ask someone with a family history of breast cancer to take a genetic test for the BRCA1/BRCA2 genes. 5% 95% 8% 92% Ask everyone applying for life insurance to take a genetic test for cancer genes such as BRCA1 or BRCA2. 3% 96% 9% 91% Ask someone applying for life insurance if they have ever had genetic testing, and if so, what the results were. 11% 89% 11% 89% Participants believe that insurance companies charge different automobile insurance rates for drivers under age 25 and different rates for males and females but most believe they shouldn t. In contrast, participants felt that charging higher rates for smokers was justified. Participants also felt that insurance companies do but should not charge different rates based on a persons family history of heart disease, HIV status or cancer. Over 89% of women agree that insurance companies do not and should not ask applicants to take a genetic test, or disclose the results of such a test. 15

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