ArticleGenetics in medicine : official journal of the American College of Medical Genetics2006
What is in a cause? Exploring the relationship between genetic cause and felt stigma.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2006. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers, 2 of them syntheses that pooled it.
What it found
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The trial behind it
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Who cites it
38 citing papers in PubMed, 2 syntheses or guidelines pooled it, 73 citations in OpenAlex.
- Stigma of Sickle Cell Disease: A Systematic Review.Issues in mental health nursing · 2018Pooled it
- Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: state of the science.Journal of cancer survivorship : research and practice · 2009Pooled it
- Addressing genetic discrimination and its stigmatizing effects through human rights.Journal of community genetics · 2026Article
- Consanguinity and willingness to perform premarital genetic screening in Sudan.European journal of human genetics : EJHG · 2025Article
- Experiences of stigmatization and its impacts among individuals living with hereditary diseases and family members in Portugal: an exploratory study.Journal of community genetics · 2025Article
- The Stigma of Hearing Loss: A Scoping Review of the Literature Across Age and Gender.Otolaryngology--head and neck surgery : official journal of American Academy of Otolaryngology-Head and Neck Surgery · 2025Article
- Bioethics at the bedside.Paediatrics & child health · 2022Article
- Courtesy stigma of parents of children with Down syndrome: Adaptation process and transcendent stage.Journal of genetic counseling · 2022Article
- Normalising life at risk of Huntington's disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination.European journal of human genetics : EJHG · 2021Article
- Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects.Frontiers in genetics · 2021Review
- Adult patients with undiagnosed conditions and their responses to unresolved uncertainty from exome sequencing.Journal of genetic counseling · 2020Article
- Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records.Applied clinical informatics · 2020Article
- Article
- Stigma in African genomics research: Gendered blame, polygamy, ancestry and disease causal beliefs impact on the risk of harm.Social science & medicine (1982) · 2020Article
- From Beyond the Grave: Use of Medical Information from the Deceased to Guide Care of Living Relatives.Current genetic medicine reports · 2020Review
- Article
- Anticipating the Ethical Challenges of Psychiatric Genetic Testing.Current psychiatry reports · 2017Review
- "Set in Stone" or "Ray of Hope": Parents' Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD.Journal of autism and developmental disorders · 2017Article
- Depression and genetic causal attribution of epilepsy in multiplex epilepsy families.Epilepsia · 2016Article
- Anticipated stigma and blameless guilt: Mothers' evaluation of life with the sex-linked disorder, hypohidrotic ectodermal dysplasia (XHED).Social science & medicine (1982) · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 1 country.
Funding
Abstract
purposeConcern over stigma as a consequence of genetic testing has grown in response to the recent increase in genetic research and testing resulting from the Human Genome Project. However, whether a genetic or hereditary basis necessarily confers a stigma to a condition remains unexamined.
methodsWe performed a qualitative interview study with 86 individuals with one of four conditions: deafness or hearing loss, breast cancer, sickle cell disease, and cystic fibrosis. The first two groups were divided approximately between people who ascribed their conditions to a genetic or hereditary cause and those who did not.
resultsRespondents interpreted genetic or hereditary causes and nongenetic causes in a variety of ways. Subjects with breast cancer reported the most consistently negative interpretation of genetic cause. This response concerned future ill health, not an enduring sense of stigma. Deaf and hard of hearing subjects provided the most consistently positive comments about a genetic or hereditary basis to their condition, casting familial hearing loss as a vital component of group and individual identity. Respondents with sickle cell disease and cystic fibrosis offered similar and positive interpretations of the genetic cause of their condition insofar as it meant their conditions were not contagious.
conclusionsAlthough some subjects report feeling stigmatized as a result of their condition, this stigmatization is not uniformly associated with the condition's cause, genetic or otherwise. Instead, stigma emerges from a variety of sources in the context of the lived experience of a particular condition.
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What OpenQuestion holds
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.