Genetic Discrimination and Screening for Hemochromatosis

Abstract

Recent advances in tests for the genotype for hemochromatosis and suggestions that the tests be used in mass screening programs for the disease raise the possibility of a large increase in the incidence of discrimination against people who are found to be homozygous for hemochromatosis. This paper presents cases of genetic discrimination drawn from a study of discrimination against people with a variety of genetic conditions. The cases discussed here involve employment and several types of insurance discrimination against people diagnosed with hemochromatosis who either are currently asymptomatic or whose condition is controlled by means of phlebotomies. There is no justification for these types of discrimination since people with controlled hemochromatosis suffer no excess mortality or morbidity. Our study suggests that genetic discrimination is already a serious problem and that any proposed screening program for hemochromatosis or other genetic condition must consider and attempt to mitigate its effects.

Public health aspects of genetic screening for hereditary haemochromatosis in Australia

“…Data on the overall attitude of health insurers to people who are at genetic risk are not available, but there are individual case reports indicating that this may be a problem. 32,33 An agreement has been made with the umbrella organisation for life and disability insurance in Australia (Investment and Financial Ser vices Association) and the Haemscreen study regarding life insurance policies for people undergoing screening for HH. This unique agreement will mean that homozygotes without organ damage and w ho have normal iron levels or whose iron levels retur n to normal following treatment will obtain policies at baseline rates.…”

Methodological Considerations in the Study of Genetic Discrimination

“…Many alleged accounts of genetic discrimination against consumers have been reported across a wide range of contexts, including insurance, employment, clinical health care and adoption services [2, 23, 27, 31,33,34,35,36]. Consumers and their advocates have also made multiple submissions to public inquiries into the issue, such as the recent Australian Law Reform Commission Inquiry into the Protection of Human Genetic Information in Australia [37].…”

“…The studies by Geller et al [26], Lapham et al [23,] and Barlow-Stewart and Keays [31] acknowledged the limitation of having an undefined population from which responses and alleged cases were drawn. In these studies, alleged cases were also anonymous and not verifiable, with the exception of the series of 38 genetic discrimination cases relating to haemochromatosis reported by Alper et al [33]. The very large case-collection exercise reported by Geller et al [26,] in which over 27,000 questionnaires were distributed, was limited by an inability to define the target population and a very poor response, thus prohibiting an unbiased estimate of prevalence.…”

Re: "Interaction Between Tobacco and Alcohol Consumption and the Risk of Cancers of the Upper Aero-Digestive Tract in Brazil"

“…In particular, there is concern about the possible loss of insurance coverage and employment, which has been reported in anecdotal cases (76). Efforts to pass laws prohibiting discrimination in health insurance and employment have not yet ensured full protection from such discrimination.…”