Genetic discrimination and screening for hemochromatosis: then and now.

Any two people on earth, save for identical twins, share in common roughly 99.9% of their genetic make-up. That 0.1% difference represents not just what, on a molecular level, distinguishes us from one another, but also has reportedly served as a basis for excluding individuals from insurance, employment, adoption, educational opportunities, family relations, as well as perceived life options. The first federal study of genetic discrimination, discrimination based on genotype as opposed to phenotype, included treated hereditary hemochromatosis (HH) as one of only five genotypes possibly providing a basis for discrimination. HH was selected because if a successfully treated condition that is nonetheless genetic but which, if properly managed, leaves affected individuals at no greater morbidity or mortality risk than the general population, then genotype independent of phenotype apparently provided a basis for exclusions. Since the publication of those results, much more is known about the genotypic and phenotypic variation of affected individuals. This paper discusses what is presently known about HH and genetic discrimination.

Genetic discrimination and screening for hemochromatosis.

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.