Evidence map›Paper›PMID 39110899›Full record

ArticleAJOB empirical bioethics

"Down Syndrome is Not a Curse": parent Perspectives on the Medicalization of Down Syndrome.

Kirsten A Riggan, Marsha Michie, Megan Allyse

Abstract read
In one paragraph

Article in AJOB empirical bioethics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

3 authors.

Kirsten A RigganBiomedical Ethics Research Program, Mayo Clinic, Rochester, Minnesota, USA.ORCID 0000-0002-0127-9555
Marsha MichieDepartment of Bioethics, Case Western Reserve University, Cleveland, Ohio, USA.ORCID 0000-0001-6631-828X
Megan AllyseDepartment of Obstetrics and Gynecology, Mayo Clinic, Rochester, Minnesota, USA.ORCID 0000-0001-6136-9256

Funding

Mayo Clinic Center for Clinical and Translational Science (CCaTS UL1 Supplement - Dr. Timothy Curry)UL1TR002377 · NCATS · MAYO CLINIC ROCHESTER · PI VESNA D GAROVIC · 2017 to 2026
$78.4M
Factors Influencing Access and Utilization of Genetic Prenatal Care Services Among Women from Underserved PopulationsK01HG009542 · NHGRI · MAYO CLINIC ROCHESTER · PI ALLYSE, MEGAN A. · 2018 to 2022
$809k
Mapping an ELSI-integrated translational pathway with cell-free fetal DNA testingK99HG006452 · NHGRI · STANFORD UNIVERSITY · PI MICHIE, MARSHA MABRY · 2012 to 2013
$171k
NCATS NIH HHS UL1 TR002377NHGRI NIH HHS K01 HG009542NHGRI NIH HHS K99 HG006452
6 · The paper itself

Abstract

backgroundPotential clinical interventions to mitigate or eliminate symptoms of Down syndrome (DS) continue to be an active area of pre-clinical and clinical research. However, views of members of the DS community have yet to be fully explored.

methodsWe conducted a survey with parents/caregivers of people with DS (

resultsSome respondents rejected the development of therapies for DS categorically as being fundamentally ableist and promoting the erasure of diverse individuals. Many reflected tensions between the desire to improve quality of life and an aversion to erasure of a child's personality.

conclusionFindings suggest that views on identity, personality, and disability may influence the acceptance of new interventions, especially if they are thought to mitigate positive attributes of the phenotype or negatively influence social acceptance of people with DS.

Indexed as

Down SyndromeMedicalizationParentsAdolescentAdultCaregiversChildFemaleHumansMaleMiddle AgedPersonalityQuality of LifeSurveys and Questionnaireschromosome silencingDown syndromemedical model of disabilitysocial model of disabilityTrisomy 21

Identifiers

PMID39110899
PMCPMC11785502

What OpenQuestion holds

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Registered trials

None linked

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.