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Technical, genetic, and ethical issues in screening and testing of African-Americans for hemochromatosis
1Department of Pathology, and MacLean Center for Clinical Medical Ethics, The University of Chicago, IL 60615, USA. jbowman@midway.uchicago.edu
Insights
Hemochromatosis is common in European-Americans, unlike sickle hemoglobin. As hemochromatosis is treatable, prevention and treatment should be prioritized for all populations.
Area of Science:
- Medical Genetics
- Population Health
- Genetic Epidemiology
Background:
- Racial classification in medical studies, particularly for hemochromatosis, requires precise definitions, moving beyond archaic terms like "Caucasian."
- Historical and ongoing discrimination in sickle hemoglobin programs disproportionately affects African-Americans.
- Understanding genetic disease prevalence necessitates accurate population categorization.
Purpose of the Study:
- To refine the definition of populations affected by hemochromatosis.
- To analyze the historical context of discrimination in genetic testing programs.
- To compare the genetic basis and implications of hemochromatosis and sickle hemoglobin.
Main Methods:
- Review of existing literature on hemochromatosis and sickle hemoglobin genetics.
- Analysis of historical data on discrimination in healthcare and employment.
- Comparative genetic analysis of hemochromatosis in different ethnic groups.
Main Results:
- Hemochromatosis is notably prevalent in European-Americans.
- Discrimination in genetic testing, exemplified by practices at Lawrence Livermore Laboratory, has impacted African-Americans.
- Genetic dissimilarities exist between European and African populations regarding hemochromatosis.
Conclusions:
- Hemochromatosis is a treatable and preventable condition, warranting universal prevention and treatment strategies.
- Given its high prevalence in European-Americans, discrimination in hemochromatosis management would not be selective for African-Americans.
- Accurate population genetics and ethical considerations are crucial for equitable healthcare delivery.
Abstract:
To define more precisely populations in which hemochromatosis is frequent to rare, problems of racial classification are introduced, with particular reference to Europeans and African-Americans. Because the category "Caucasian" includes a multitude of dissimilar peoples, the categories Europeans and European-Americans have been substituted for Caucasian, which is archaic. The background of discrimination in sickle hemoglobin programs for African-Americans are then analyzed, including, discrimination by employers, life insurance, and selective mandatory testing. Discrimination and selective testing of African-American employees of the Lawrence Livermore Laboratory continues today without prior consent, as it has since the 1970s. Dissimilarities between the genetics of hemochromatosis in Europeans and their descendants, Africans, and African-Americans are briefly analyzed. Finally, it is concluded that because hemochromatosis is unlike sickle hemoglobin in that it is potentially preventable and treatable, prevention and treatment principles should apply as in other diseases. Furthermore, because hemochromatosis is so common in European-Americans, discrimination, if practiced, would not be selective for African-Americans.
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