Evidence map›Paper›PMID 31190471›Full record

ArticleMolecular genetics & genomic medicine2019

Attitudes of people with inherited retinal conditions toward gene editing technology.

Lily Hoffman-Andrews, Ronit Mazzoni, Michelle Pacione, Rosemarie Garland-Thomson, Kelly E Ormond

Open access · goldAbstract read
In one paragraph

Article in Molecular genetics & genomic medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.

0numbers the graph read from it
0cells of the map it votes in
14citing papers in PubMed
1.4field-weighted citation impact, top 19% of its field
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

14 citing papers in PubMed, 26 citations in OpenAlex.

  1. Article
  2. From Blog to lab: testing messages to shift public opinion on gene editing.Frontiers in bioengineering and biotechnology · 2026
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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

5 authors at 4 institutions in 1 country.

Lily Hoffman-AndrewsDepartment of Genetics, Stanford University School of Medicine, Stanford, CA.ORCID 0000-0001-8021-8306
Ronit MazzoniDepartment of Genetics, Santa Clara Valley Medical Center, San Jose, CA.
Michelle PacioneDepartment of Genetics, Stanford University School of Medicine, Stanford, CA.ORCID 0000-0003-2844-1855
Rosemarie Garland-ThomsonDepartment of English, Emory University, Atlanta, GA.ORCID 0000-0003-3999-6012
Kelly E OrmondDepartment of Genetics, Stanford University School of Medicine, Stanford, CA.ORCID 0000-0002-1033-0818
Stanford University · USEmory University · USSanta Clara Valley Medical Center · USStanford Medicine · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe views of people with genetic conditions are crucial to include in public dialogue around developing gene editing technologies. This qualitative study sought to characterize the attitudes of people with inherited retinal conditions (retinitis pigmentosa [RP] and Leber congenital amaurosis [LCA]) toward gene editing.

methodsIndividuals with RP (N = 9) and LCA (N = 8) participated in semi-structured qualitative interviews about their experience with and attitudes toward blindness, and their views about gene editing technology for somatic, germline, and enhancement applications.

resultsParticipants saw potential benefits from gene editing in general, but views about its use for retinal conditions varied and were influenced by personal perspectives on blindness. Those who felt more negatively toward blindness, particularly those with later onset blindness, were more supportive of gene editing for retinal conditions. Concerns about both germline and somatic editing included: the importance of informed consent; impacts of gene editing on social attitudes and barriers affecting blind people; and worries about "eliminating" blindness or other traits.

conclusionPeople with RP and LCA have diverse attitudes toward gene editing technology informed by their own lived experience with disability, and many have concerns about how the ways in which it is discussed and implemented might affect them.

Indexed as

AdultAgedAttitudeAttitude to HealthBlindnessFemaleGene EditingGenotypeHealth Knowledge, Attitudes, PracticeHumansLeber Congenital AmaurosisMaleMiddle AgedMutationPedigreePhenotypedisabilitygene editinggene therapyLeber congenital amaurosisretinitis pigmentosa

Identifiers

PMID31190471
PMCPMC6625087
OpenAlexW2952626132

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

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.