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

Nancy E. Kass, Sara Chandros Hull, Marvin R. Natowicz, Ruth R. Faden, Laura Plantinga, Lawrence O. Gostin, Julia Slutsman

Research output: Contribution to journalArticlepeer-review

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 the overall study population (19 and 27%, respectively) but were more likely among those with genetic conditions (30 and 37%, respectively). Legislation and other policy-making should target the needs of persons with all conditions and not focus exclusively on genetic discrimination, given that experiences and concerns generally do not differ based on the genetic etiology of the condition.

Original languageEnglish (US)
Pages (from-to)261-270
Number of pages10
JournalAmerican Journal of Medical Genetics
Volume128 A
Issue number3
DOIs
StatePublished - Jul 30 2004

Keywords

  • Confidentiality
  • Cross sectional survey
  • Disclosure
  • Family members
  • Hereditary disease

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

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