Medical privacy and the disclosure of personal medical information: the beliefs and experiences of those with genetic and other clinical conditions

American Journal of Medical Genetics. Part a
Nancy E KassJulia Slutsman

Abstract

There has been heightened legislative attention to medical privacy and to protections from genetic discrimination, without large-scale studies to document privacy concerns or analysis of whether experiences differ by whether the condition is genetic (defined here as a single-gene disorder) or non-genetic. To determine whether experiences regarding privacy, disclosure, and consequences of disclosure differ by whether one's medical condition is genetic, we conducted a descriptive study with one-time, structured quantitative and qualitative interviews. We interviewed approximately 100 adults or parents of children with each of the following medical conditions: sickle cell disease, cystic fibrosis, diabetes, and HIV, and 200 adults with or at risk for breast cancer or colon cancer. The percentages of the total 597 respondents experiencing positive or negative consequences of disclosure and the degree to which experiences differed by whether the condition was genetic were the outcomes of interest. Seventy-four percent were glad and 13% regretted others knew about their condition; these findings did not differ significantly by genetic vs. non-genetic condition. Reports of job and health insurance discrimination were not uncommon for ...Continue Reading

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Citations

Feb 24, 2007·Journal of Genetic Counseling·Kathleen A KnaflDenise Angst
Apr 20, 2010·Journal of Genetic Counseling·Aunchalee E L PalmquistEllen R Gritz
Oct 13, 2010·Public Health Genomics·A J GoldenbergR R Sharp
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Jun 20, 2007·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Susan M WolfUNKNOWN Working Group on Genetic Testing in Disability Insurance
Mar 9, 2007·American Journal of Medical Genetics. Part a·Marc S Williams
Apr 14, 2018·Issues in Mental Health Nursing·Dominique BulginCoretta Jenerette
Mar 2, 2019·American Journal of Medical Genetics. Part a·Neha KumarRajiv N Rimal
Nov 4, 2008·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Katrina J LowstuterJeffrey N Weitzel
Jan 1, 2015·The New Bioethics : a Multidisciplinary Journal of Biotechnology and the Body·Barbara Wilkinson, Kavita Shah Arora
Feb 10, 2007·American Journal of Medical Genetics. Part a·Nancy E KassLawrence O Gostin

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