ArticleAmerican journal of medical genetics. Part A2004
Medical privacy and the disclosure of personal medical information: the beliefs and experiences of those with genetic and other clinical conditions.
Article in American journal of medical genetics. Part A, 2004. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Stigma of Sickle Cell Disease: A Systematic Review.Issues in mental health nursing · 2018Pooled it
- Pharmacological Prevention in Breast Cancer: Current Evidence, Challenges, and Future Directions.Cancers · 2025Review
- Managing the need to tell: Triggers and strategic disclosure of thalassemia major in Singapore.American journal of medical genetics. Part A · 2019Article
- Joint replacement recipients' views about health information privacy.Health expectations : an international journal of public participation in health care and health policy · 2015Article
- Article
- Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research.The Clinical journal of pain · 2014Article
- Patient perspectives on group benefits and harms in genetic research.Public health genomics · 2011Article
- "The cancer bond": exploring the formation of cancer risk perception in families with Lynch syndrome.Journal of genetic counseling · 2010Article
- Public opinion about the importance of privacy in biobank research.American journal of human genetics · 2009Article
- Civilian and military genetics: nondiscrimination policy in a post-GINA world.American journal of human genetics · 2008Article
- Influence of genetic discrimination perceptions and knowledge on cancer genetics referral practice among clinicians.Genetics in medicine : official journal of the American College of Medical Genetics · 2008Article
- Colorectal cancer cases and relatives of cases indicate similar willingness to receive and disclose genetic information.Genetic testing · 2008Article
- Parents' perceptions of functioning in families having a child with a genetic condition.Journal of genetic counseling · 2007Article
- Access to health insurance: experiences and attitudes of those with genetic versus non-genetic medical conditions.American journal of medical genetics. Part A · 2007Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.