Evidence map›Paper›PMID 34315465›Full record

ArticleBMC medical ethics2021

To disclose, or not to disclose? Perspectives of clinical genomics professionals toward returning incidental findings from genomic research.

Isamme AlFayyad, Mohamad Al-Tannir, Amani Abu-Shaheen, Saleh AlGhamdi

Open access · goldAbstract read
In one paragraph

Article in BMC medical ethics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
2.0field-weighted citation impact, top 14% 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

8 citing papers in PubMed, 14 citations in OpenAlex.

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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

4 authors at 2 institutions in 1 country.

Isamme AlFayyadResearch Center, King Fahad Medical City, P.O. Box. 59046, Riyadh, 11525, Saudi Arabia. ialfayyad@gmail.com.ORCID 0000-0003-3326-5147
Mohamad Al-TannirResearch Center, King Fahad Medical City, P.O. Box. 59046, Riyadh, 11525, Saudi Arabia.
Amani Abu-ShaheenResearch Center, King Fahad Medical City, P.O. Box. 59046, Riyadh, 11525, Saudi Arabia.
Saleh AlGhamdiResearch Center, King Fahad Medical City, P.O. Box. 59046, Riyadh, 11525, Saudi Arabia.
King Fahd Medical City · SAPrince Sattam Bin Abdulaziz University · SA

Funding

King Fahad Medical City 019-013
6 · The paper itself

Abstract

backgroundClinical genomic professionals are increasingly facing decisions about returning incidental findings (IFs) from genetic research. Although previous studies have shown that research participants are interested in receiving IFs, yet there has been an argument about the extent of researcher obligation to return IFs. We aimed in this study to explore the perspectives of clinical genomics professionals toward returning incidental findings from genomic research.

methodsWe conducted a national survey of a sample (n = 113) of clinical genomic professionals using a convenient sampling. A self-administered questionnaire was used to explore their attitudes toward disclosure of IFs, their perception of the duties to return IFs and identifying the barriers for disclosure of IFs. A descriptive analysis was employed to describe participants' responses.

resultsSixty-five (57.5%) respondents had faced IFs in their practice and 31 (27.4%) were not comfortable in discussing IFs with their research subjects. Less than one-third of the respondents reported the availability of guidelines governing IFs. The majority 84 (80%) and 69 (62.7%) of the study participants indicated they would return the IFs if the risk of disease threat ≥ 50% and 6-49%, respectively and 36 (31.9%) reported they have no obligation to return IFs.

conclusionClinical genomics professionals have positive attitudes and perceptions toward the returning IFs from genomic research, yet some revealed no duty to do so. Detailed guidelines must be established to provide insights into how genomics professionals should be handled IFs.

Indexed as

GenomicsIncidental FindingsDisclosureHumansResearch PersonnelResearch SubjectsAttitudesBarriersDisclosureGenomic researchIncidental findingsPerceptionSaudi Arabia

Identifiers

PMID34315465
PMCPMC8314473
OpenAlexW3183402854

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.