This survey obtained perceptions of discrimination, rather than providing any objective measure of it. Interpreting these reports is complicated by the degree to which the respondents’ health has been affected by their genetic condition. It may be difficult to disentangle discrimination on purely genetic grounds from that on the grounds of disablement.
However, the design of this survey made it possible to overcome this problem to a certain extent. The whole sample could be disaggregated into subgroups representing different levels of risk to insurers. It was then possible to analyse whether everyone in these subgroups was being treated appropriately for the risk they represented. Three subgroups were identified whose members should represent no adverse actuarial risk to insurers on genetic grounds. These subgroups are healthy carriers of recessive or sex linked conditions (Duchenne muscular dystrophy and cystic fibrosis), healthy non-carriers of late onset disorders (Huntington’s disease and myotonic muscular dystrophy), and the parents of children whose condition is the result of a spontaneous mutation (Marfan’s syndrome, tuberous sclerosis, neurofibromatosis, and myotonic muscular dystrophy). We suggest that when respondents from these subgroups report problems in obtaining life insurance and believe that these problems result from the genetic condition affecting their family, this treatment by life insurance companies is inappropriate and unjustified.
Discrimination in insurance is “justified” under the Disability Discrimination Act 1995 if it is based on actuarial or other reliable information—that is, on statistical data or a medical report.6,7
The insurance industry provides life insurance to 95% of applicants at a standard rate.8
Of the remainder, 4% have to pay higher premiums and 1% are refused life insurance outright. This 95:4:1 ratio was mirrored by the results of our omnibus survey of the general population. However, the ratio contrasts significantly with the experience of the 13% of people (71/533) in the study sample who experienced problems that they believed resulted from their family’s genetic history, but who actually presented no adverse actuarial risk on genetic grounds. In the language of the Disability Discrimination Act, their treatment seems to represent unjustified genetic discrimination in life insurance.
The results show that people belonging to support groups for families with genetic disorders were not treated consistently by insurers. That there is no clear pattern may be the most important finding; it suggests error on the part of insurers rather than a coherent industry wide policy of genetic discrimination. Practical and ethical constraints make it impossible to check whether the decisions by insurers in these cases were fair and justified. Furthermore, genetic support groups in Britain do not have universal membership of all families affected by the specific disorder. This makes it impossible to extrapolate the results of this survey to a numerical estimate of the extent of genetic discrimination throughout the United Kingdom.
The response rate, although lower than might be achieved in research conducted in a clinical setting, is reasonable for a postal survey. The expected response rate for postal surveys in Britain is around 46%.9
The low response rate may have resulted in some bias, but reviews of survey research have concluded that provided response rates exceed 50% on surveys of homogenous groups “the widespread fear that non-response bias seriously affects mail surveys is not justified.”10,11
It is possible that those who have not experienced discrimination may have been less likely to respond to the survey, thus introducing a bias. However, in this preliminary study we could not gain enough useful information on the non-responders to compare them with responders. But the characteristics of non-responders are not relevant to this study’s principal finding that there was an identifiable subgroup of respondents (71/533; 13%) who represented no actuarial risk on genetic grounds, but perceived that they had been discriminated against on this basis. This should never have occurred, however small the numbers, and suggests an error in handling genetic information by the insurance industry
These findings agree with those from several studies in the United States which also showed that confusion and ignorance in interpreting genetic information is central to the problem of genetic discrimination.12–14
For instance, it has been shown that chief medical officers of United States insurers13
and the state insurance commissioners, who regulate the insurance industry,14
are surprisingly ignorant of modern human genetics. There is no evidence on how well informed sales agents, underwriters, and other insurance industry personnel are about genetics.
Our findings suggest that in less clear cut instances, where genes confer an increased susceptibility rather than 100% or zero probability, some people might be charged high premiums that cannot be justified on the actuarial risk they present. Furthermore, these results are limited to monogenetic conditions, where the patterns of inheritance and the risk factors are comparatively well known. Tests for polygenic disorders and genetic predisposition to common diseases will yield lower probability information about an individual’s life expectancy, and it is arguable that this will be so imprecise as to play no important part in life insurance.15,16
The significance of genetic test results can differ according to the type of insurance (medical or life, for example).17
However, if insurers look at genetic information with a lower probability, they will have to ensure not only that they interpret it correctly but that they are seen to interpret it correctly. In the light of our results for monogenetic conditions, serious consideration will have to be given (and not just by insurers) to the difficulties of fulfilling both duties.
This study presents preliminary empirical evidence of genetic discrimination occurring in our society. Further investigations are needed to establish in more detail the character of such problems and its sources.