ArticleGenetics in medicine : official journal of the American College of Medical Genetics2009
"Am I my genes?": Questions of identity among individuals confronting genetic disease.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
What it found
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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
17 citing papers in PubMed, 38 citations in OpenAlex.
- Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services.Orphanet journal of rare diseases · 2025Article
- Maintaining psychological well-being when living at risk of Huntington's disease: An interpretative phenomenological analysis.Journal of genetic counseling · 2025Article
- Evidence-based recommendations for delivering the diagnosis of X & Y chromosome multisomies in children, adolescents, and young adults: an integrative review.BMC pediatrics · 2024Review
- Attitudes among parents of persons with autism spectrum disorder towards information about genetic risk and future health.European journal of human genetics : EJHG · 2022Article
- Treating rare diseases with the cinema: Can popular movies enhance public understanding of rare diseases?Orphanet journal of rare diseases · 2022Article
- Family Identity and Roles in the Context of Li-Fraumeni Syndrome: "No One's Like Us Mutants".Health & social work · 2021Article
- Role of older generations in the family's adjustment to Huntington disease.Journal of community genetics · 2021Article
- Genetic attributions and perceptions of naturalness are shaped by evaluative valence.The Journal of social psychology · 2021Article
- "It's being part of the big picture, even though you're a tiny jigsaw piece"-motivations and expectations of individuals participating in the Enroll-HD observational study.Journal of community genetics · 2020Article
- "…This Has to Do With My Identity. And I Don't Want to Make it Totally Transparent." Identity Relevance in the Attitudes of Affected People and Laypersons to the Handling of High-Throughput Genomic Data.Frontiers in sociology · 2020Article
- Systematic scoping review of the concept of 'genetic identity' and its relevance for germline modification.PloS one · 2020Article
- Perspectives of Sickle Cell Disease Stakeholders on Heritable Genome Editing.The CRISPR journal · 2019Article
- Potential use of clinical polygenic risk scores in psychiatry - ethical implications and communicating high polygenic risk.Philosophy, ethics, and humanities in medicine : PEHM · 2019Review
- The Confluence of Psychiatric Symptoms and Neurodegenerative Disease: Impact on Genetic Counseling.Journal of genetic counseling · 2017Article
- Issues Arising in Psychological Consultations to Help Parents Talk to Minor and Young Adult Children about their Cancer Genetic Test Result: a Guide to Providers.Journal of genetic counseling · 2017Article
- Article
- "What does it mean?": uncertainties in understanding results of chromosomal microarray testing.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author at 1 institution in 1 country.
Funding
Abstract
purpose: To explore many questions raised by genetics concerning personal identities that have not been fully investigated.
methods: We interviewed in depth, for 2 hours each, 64 individuals who had or were at risk for Huntington disease, breast cancer, or alpha-1 antitrypsin deficiency.
results: These individuals struggled with several difficult issues of identity. They drew on a range of genotypes and phenotypes (e.g., family history alone; mutations, but no symptoms; or symptoms). They often felt that their predicament did not fit preexisting categories well (e.g., "sick," "healthy," "disabled," "predisposed"), due in part to uncertainties involved (e.g., unclear prognoses, since mutations may not produce symptoms). Hence, individuals varied in how much genetics affected their identity, in what ways, and how negatively. Factors emerged related to disease, family history, and other sources of identity. These identities may, in turn, shape disclosure, coping, and other health decisions.
conclusions: Individuals struggle to construct a genetic identity. They view genetic information in highly subjective ways, varying widely in what aspects of genetic information they focus on and how. These data have important implications for education of providers (to assist patients with these issues), patients, and family members; and for research, to understand these issues more fully.
Indexed as
Identifiers
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.