ArticleGenetics in medicine : official journal of the American College of Medical Genetics2013
Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 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
18 citing papers in PubMed, 69 citations in OpenAlex.
- "It didn't feel like anything unusual because we had already been through so much": Disability-related research experiences of families with children enrolled in the undiagnosed diseases network.Genetics in medicine : official journal of the American College of Medical Genetics · 2026Article
- A Survey-Based Study Investigating Opinions on Genetic Research Among Swedish Autistic Individuals and Parents of Autistic Children.Autism : the international journal of research and practice · 2026Article
- "It is important to me to know where the information is going": Views of adults with intellectual disability on data sharing in precision medicine research.Genetics in medicine open · 2026Article
- Review
- Disability, Genetic Counseling, and Medical Education: From Eugenics to Anti-Ableism.Annual review of genomics and human genetics · 2025Review
- Towards trustworthiness of precision medicine research for people with disabilities.Nature genetics · 2025Article
- Primer on disability: Why accessibility is important for all medical physicists.Journal of applied clinical medical physics · 2025Review
- Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?The American journal of bioethics : AJOB · 2025Article
- Nothing about Us without Us in Precision Medicine: A Call to Reframe Disability Difference in Genetics and Genomics.The Hastings Center report · 2024Article
- Invisible: People with Disability and (In)equity in Precision Medicine Research.The American journal of bioethics : AJOB · 2024Article
- The need for an intersectionality framework in precision medicine research.American journal of human genetics · 2023Article
- Toward Equity in Research on Intellectual and Developmental Disabilities.American journal on intellectual and developmental disabilities · 2023Article
- The development of a core outcome set for studies of pregnant women with multimorbidity.BMC medicine · 2023Article
- Words matter: The language of difference in human genetics.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- Addressing underrepresentation in genomics research through community engagement.American journal of human genetics · 2022Review
- Transgender and gender-diverse (TGD) individuals' perspectives on research seeking genetic variants associated with TGD identities: a qualitative study.Journal of community genetics · 2022Article
- National Society Of Genetic Counselors Natalie Weissberger Paul National Leadership Award Address: "Patients and Research: Paths to Personal and Professional Growth".Journal of genetic counseling · 2016Article
- "This lifetime commitment": Public conceptions of disability and noninvasive prenatal genetic screening.American journal of medical genetics. Part A · 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
2 authors at 1 institution in 1 country.
Funding
Abstract
The relationship between the medical and disability communities is complex and is influenced by historical, social, and cultural factors. Although clinicians, health-care researchers, and people with disabilities all work from the standpoint of the best interest of disabled individuals, the notion of what actually is "best" is often understood quite differently among these constituencies. Eugenics campaigns, legal restrictions on reproductive and other freedoms, and prenatal testing recommendations predicated on the lesser worth of persons with disabilities have all contributed toward the historic trauma experienced by the disability community, particularly with respect to medical genetics. One premise of personalized medicine is that different individuals require different solutions. Disabled persons' experiences are a reminder that these solutions can be best realized by maintaining awareness and sensitivity in a complex ethical and moral terrain. Geneticists should recognize that their research may have implications for those with disabilities; they should recognize the impact of the historical trauma of the eugenics movement, and seek to involve people with disabilities in discussions about policies that affect them. Dialogue can be messy and uncomfortable, but it is the only way to avoid the mistakes of the past and to ensure a more equitable, and healthful, future.
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.