Abstract
Though the US passed the Genetic Information Non-Discrimination Act, many questions remain of how individuals confronting genetic disease view and experience possible discrimination. We interviewed, for 2 hours each, 64 individuals who had, or were at risk for, Huntington’s Disease, breast cancer, or Alpha-1 antitrypsin deficiency. Discrimination can be implicit, indirect and subtle, rather than explicit, direct and overt; and be hard to prove. Patients may be treated “differently” and unfairly, raising questions of how to define “discrimination”, and “appropriate accommodation”. Patients were often unclear and wary about legislation. Fears and experiences of discrimination can shape testing, treatment, and disclosure. Discrimination can be subjective, and take various forms. Searches for only objective evidence of it may be inherently difficult. Providers need to be aware of, and prepared to address, subtle and indirect discrimination; ambiguities, confusion and potential limitations concerning current legislation; and needs for education about these laws. Policies are needed to prevent discrimination in life, long-term care, and disability insurance, not covered by GINA.
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Acknowledgments
I would like to thank Wendy Chung, Karen Marder, Deborah Thorne, Carol Moskowitz, Jennifer Williamson, Edward Eden, Lori Tartell, Rubie Senie, Victor Grann, Carolyn Kumah, Lisa Chin and Melissa Conley. This project was funded through grant #5-R01-HG002431-01 from the ELSI program of the National Human Genome Research Institute.
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Appendix: Sample Questions from Semi-Structured Interview
Appendix: Sample Questions from Semi-Structured Interview
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What do you feel comfortable or uncomfortable having others know about your genetic or other medical information? What assumptions do you make concerning protections of patient privacy and confidentiality?
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Have you discussed testing and/or treatment issues with any other people? How, who, when and why? What did they say? How did you feel about the interactions you had with them about these issues?
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Have you ever felt stigma or discrimination because of an illness? Because of other reasons?
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Have other people ever found out about your health information without your wanting them to? When and how?
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Does your employer have access to your health information? Do you think he/she would under new laws? Do you think your employer has ever used health information in work decisions (such as hiring or promotions) with employees?
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Do you know of others (such as family members) who have faced discrimination or stigma as a result of genetic or other health information? What experiences did these others have?
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Klitzman, R. Views of Discrimination among Individuals Confronting Genetic Disease. J Genet Counsel 19, 68–83 (2010). https://doi.org/10.1007/s10897-009-9262-8
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DOI: https://doi.org/10.1007/s10897-009-9262-8