ReviewAmerican journal of medical genetics. Part A2011
The relationship between the genetic counseling profession and the disability community: a commentary.
Review in American journal of medical genetics. Part A, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
28 citing papers in PubMed, 65 citations in OpenAlex.
- Disability, Genetic Counseling, and Medical Education: From Eugenics to Anti-Ableism.Annual review of genomics and human genetics · 2025Review
- Genetic counseling training program perspectives on delivering disability-related education.Journal of genetic counseling · 2025Article
- Interpretative phenomenological analysis and genetic counseling.Journal of genetic counseling · 2025Review
- Clinical genetic counselors' use of people- and identity-first language in regard to patients' identification with disability.Journal of genetic counseling · 2025Article
- Unpacking the notion of "serious" genetic conditions: towards implementation in reproductive decision-making?European journal of human genetics : EJHG · 2025Review
- Genetic counseling workforce diversity, inclusion, and capacity in Australia and New Zealand.Genetics in medicine open · 2024Article
- Down Syndrome: how to communicate the diagnosis.Italian journal of pediatrics · 2023Review
- Birds of a Feather? Genetic Counseling, Genetic Testing, and Humanism.Cold Spring Harbor perspectives in medicine · 2020Review
- Bridging the Gap between Scientific Advancement and Real-World Application: Pediatric Genetic Counseling for Common Syndromes and Single-Gene Disorders.Cold Spring Harbor perspectives in medicine · 2020Review
- Culpable Ignorance, Professional Counselling, and Selective Abortion of Intellectual Disability.Journal of bioethical inquiry · 2020Article
- Human genome editing and the identity politics of genetic disability.Journal of community genetics · 2020Article
- Cultivating inclusivity in precision medicine research: disability, diversity, and cultural competence.Journal of community genetics · 2019Article
- Exploring the Issues Surrounding Clinical Exome Sequencing in the Prenatal Setting.Journal of genetic counseling · 2018Article
- Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study.Journal of genetic counseling · 2018Article
- "This lifetime commitment": Public conceptions of disability and noninvasive prenatal genetic screening.American journal of medical genetics. Part A · 2016Article
- Whole-Genome Sequencing and Disability in the NICU: Exploring Practical and Ethical Challenges.Pediatrics · 2016Article
- Presenting life with cystic fibrosis: a Q-methodological approach to developing balanced, experience-based prenatal screening information.Health expectations : an international journal of public participation in health care and health policy · 2015Article
- Attitudes of mothers of children with down syndrome towards noninvasive prenatal testing.Journal of genetic counseling · 2014Article
- Attitudes towards non-invasive prenatal testing for aneuploidy among US adults of reproductive age.Journal of perinatology : official journal of the California Perinatal Association · 2014Article
- Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities.Genetics in medicine : official journal of the American College of Medical Genetics · 2013Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 2 countries.
Funding
Abstract
Since the inception of the field of genetic counseling, the profession has had a tenuous relationship with the disability community. Genetic counselors both offer prenatal diagnostic testing that allows individuals the opportunity to avoid the birth of a child with a disability and they advocate for the rights of individuals who have a disability. Some in the disability rights community have argued that they feel their lives and the lives of the disabled individuals in their families judged by the offer of prenatal genetic diagnosis and by the attitudes of genetic service providers they encounter in clinical settings. Select voices from the disability community fear that the result of developing technologies may contribute to a world less tolerant of disabilities. The available empirical data suggest that genetic counselors do little to counteract these perspectives. Although limited, investigations into the attitudes and practices of genetic counselors suggest that they have a more negative perspective on disabilities than individuals whose lives are directly affected by them and these attitudes may affect their description of disabling conditions in a prenatal setting. The National Society of Genetic Counselors, the organization that represents the profession in the US has more publicly aligned itself with abortion service providers over disease advocacy organizations, thus subjecting itself to the perception of bias. We suggest possible solutions to these criticisms and argue that individually and collectively, genetic counseling professionals should develop and identify opportunities to more fully support and advocate for the needs of a broader spectrum of clients.
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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.