ArticleMolecular genetics & genomic medicine2018
How do genetically disabled adults view selective reproduction? Impairment, identity, and genetic screening.
Article in Molecular genetics & genomic medicine, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
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
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The attitudes of individuals with or at risk of adult-onset genetic conditions on reproductive genetic testing: A systematic review.Journal of genetic counseling · 2025Pooled it
- Considering seriousness in preconception carrier screening: a framework to support policy deliberation.Journal of community genetics · 2026Review
- An exploration of the perspectives of Dutch adults experiencing a genetic condition on human germline gene editing.Journal of community genetics · 2025Article
- Prospective parents' views on reproductive genetic carrier screening: "You know better, you do better".Journal of genetic counseling · 2025Article
- Disability, Genetic Counseling, and Medical Education: From Eugenics to Anti-Ableism.Annual review of genomics and human genetics · 2025Review
- Review
- From Choice to Justice: Disrupting the Binary Political Logics of Assisted Reproduction.Health and human rights · 2024Article
- Danish heritable retinoblastoma survivors' perspectives on reproductive choices: "It's important for me, not to pass on this condition".Journal of genetic counseling · 2023Article
- How does the genomic naive public perceive whole genomic testing for health purposes? A scoping review.European journal of human genetics : EJHG · 2023Article
- A qualitative interview study of the attitudes toward reproductive options of people with genetic visual loss.Journal of genetic counseling · 2022Article
- Views of patients and parents of children with genetic disorders on population-based expanded carrier screening.Prenatal diagnosis · 2022Article
- Neonatal and carrier screening for rare diseases: how innovation challenges screening criteria worldwide.Journal of community genetics · 2021Article
- Attitudes toward population screening among people living with fragile X syndrome in the UK: 'I wouldn't wish him away, I'd just wish his fragile X syndrome away'.Journal of genetic counseling · 2021Article
- Social and cultural influences on genetic screening programme acceptability: A mixed-methods study of the views of adults, carriers, and family members living with thalassemia in the UK.Journal of genetic counseling · 2020Article
- Letter to the editor. Gene editing and disabled people: a response to Iñigo de Miguel Beriain.Journal of community genetics · 2020Article
- Gene editing and disabled people: a response to Felicity Boardman.Journal of community genetics · 2020Article
- Human germline genome editing is illegal in Canada, but could it be desirable for some members of the rare disease community?Journal of community genetics · 2020Review
- Human genome editing and the identity politics of genetic disability.Journal of community genetics · 2020Article
- Attitudes of people with inherited retinal conditions toward gene editing technology.Molecular genetics & genomic medicine · 2019Article
- Preventing lives affected by hemophilia: A mixed methods study of the views of adults with hemophilia and their families toward genetic screening.Molecular genetics & genomic medicine · 2019Article
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.
Funding
Abstract
backgroundGenomic medicine is rapidly evolving, particularly in the domain of reproduction. Population carrier screening for a range of disorders is becoming possible using whole genome/exome sequencing. However, very little is known about the views of genetically disabled adults toward selective reproduction.
methodsForty-three in-depth qualitative interviews were carried out with adults living with different types of genetic condition, recruited through support groups and clinics. Interviews covered participants' experiences of their condition and their views toward genetic intervention in reproduction. Thematic analysis of the data using NVivo 11 was undertaken, and participants were assigned categories as either supporting, not-supporting, or having ambivalent views toward selective reproduction.
resultsThe majority of participants (65%) expressed either disapproval of, or held ambivalent views toward, selective reproduction. Key reasons for non-support included regarding genetic impairment as part of personal identity and the prioritization of social and environmental barrier removal. Key reasons for support of selective reproduction included negative and externalizing attitudes toward genetic impairment and a belief in the importance of informed reproductive decision-making.
conclusionThe degree to which participants identified with their impairment, more so than how they valued it, was significant in determining attitudes toward selective reproduction. Those who supported genetic screening viewed their impairment as separate to themselves, while participants who considered their impairment as integral to their identity were most likely to report ambivalent or negative attitudes. Policymakers and stakeholders considering the role of genetic carrier screening panels might usefully engage with adults affected by heritable disease as well as disability identity politics when considering the acceptability and social impact of genetic screening programs.
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.