Evidence map›Paper›PMID 37811899›Full record

ArticleGenetics in medicine : official journal of the American College of Medical Genetics2024

Views of adults living with sickle cell disease on the theoretical return of secondary genomic findings.

K Jameson Floyd, Faeben Wossenseged, Ashley J Buscetta, Grace-Ann Fasaye, Vence L Bonham

Open access · bronzeAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2024. 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
0.6field-weighted citation impact, top 27% 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

1 citing paper in PubMed, 1 citations in OpenAlex.

  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

5 authors at 1 institution in 1 country.

K Jameson FloydHealth Disparities Unit, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD.
Faeben WossensegedHealth Disparities Unit, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD.
Ashley J BuscettaHealth Disparities Unit, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD.
Grace-Ann FasayeCenter for Cancer Research, Genetics Branch, National Cancer Institute. National Institutes of Health, Bethesda, MD.
Vence L BonhamHealth Disparities Unit, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD. Electronic address: bonhamv@mail.nih.gov.
National Institutes of Health · US

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

purposeAlthough the body of research investigating research participants' opinions on the return of actionable secondary genomic findings grows, there has been limited study of individuals with genetic conditions, such as sickle cell disease (SCD). It is imperative that the views of diverse research participants on return of results (RoR) be investigated and rooted in the context of advancing health equity in genomics research.

methodsWe conducted qualitative, semi-structured interviews with 30 adults living with SCD with differing insurance coverages and utilized a directed content analysis to derive themes.

resultsStudy findings show that living with SCD is a key influence on views of RoR. Participants were in favor of RoR while expressing concern regarding the burden RoR would place on their SCD management. Respondents also expressed an expectation for researchers to devote resources toward seeking ancillary care downstream and discussed how barriers faced when navigating SCD would inform their access to ancillary care.

conclusionResearch participants living with chronic genetic conditions such as SCD are generally in favor of RoR but anticipate experiencing barriers to care similar to those faced navigating their SCD. Understanding the views of diverse cohorts on RoR will help researchers better understand downstream barriers participants may face.

Indexed as

Anemia, Sickle CellGenomicsAdultChronic DiseaseHumansResearch PersonnelAncillary careInsurance coverageReturn of resultsSecondary findingsSickle cell disease

Identifiers

PMID37811899
PMCPMC10859184
OpenAlexW4387398632

What OpenQuestion holds

Textmetadata
LicenceTDM
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.