Evidence map›Paper›PMID 31742431›Full record

ArticleThe CRISPR journal2019

Perspectives of Sickle Cell Disease Stakeholders on Heritable Genome Editing.

Brittany M Hollister, Mariclare C Gatter, Khadijah E Abdallah, Alyssa J Armsby, Ashley J Buscetta, Yen Ji Julia Byeon, Kayla E Cooper, Stacy Desine, Anitra Persaud, Kelly E Ormond and 1 more

Abstract read
In one paragraph

Article in The CRISPR journal, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed, 1 pooled it
–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

13 citing papers in PubMed, 1 synthesis or guideline pooled it.

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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

11 authors.

Brittany M HollisterSocial and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.
Mariclare C GatterSocial and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.
Khadijah E AbdallahSocial and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.
Alyssa J ArmsbyDepartment of Genetics and University of Pennsylvania, Philadelphia, Pennsylvania.
Ashley J BuscettaSocial and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.
Yen Ji Julia ByeonSocial and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.
Kayla E CooperSocial and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.
Stacy DesineSocial and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.
Anitra PersaudSocial and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.
Kelly E OrmondDepartment of Genetics and University of Pennsylvania, Philadelphia, Pennsylvania.
Vence L BonhamSocial and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.

Funding

Insights into Sickle Cell Trait and Sickle Cell DiseaseZIAHG200394 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI BONHAM, VENCE L · 2014 to 2025
$3.8M
Intramural NIH HHS ZIA HG200394
6 · The paper itself

Abstract

Advances in CRISPR technology and the announcement of the first gene-edited babies have sparked a global dialogue about the future of heritable genome editing (HGE). There has been an international call for public input to inform a substantive debate about benefits and risks of HGE. This study investigates the views of the sickle cell disease (SCD) community. We utilized a mixed-methods approach to examine SCD stakeholders' views in the United States. We found SCD stakeholders hold a nuanced view of HGE. Assuming the technology is shown to be safe and effective, they are just as supportive of HGE as genetics professionals, but more supportive than the general public. However, they are also concerned about the potential implications of HGE, despite this support. As discourse surrounding HGE advances, it is crucial to engage disease communities and other key stakeholders whose lives could be altered by these interventions.

Indexed as

AdultAnemia, Sickle CellClustered Regularly Interspaced Short Palindromic RepeatsCRISPR-Cas SystemsFemaleFocus GroupsGene EditingGenetic TherapyHumansMaleMiddle AgedStakeholder Participation

Identifiers

PMID31742431
PMCPMC6919256

What OpenQuestion holds

Textmetadata
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.