Evidence map›Paper›PMID 30991996›Full record

ArticleBMC medical genomics2019

Young adults' attitudes to sharing whole-genome sequencing information: a university-based survey.

Pepita Barnard, Sarah Sharples, Brian J Thomson, Jonathan M Garibaldi

Abstract read
In one paragraph

Article in BMC medical genomics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Maternal perspectives on sharing newborn genomic data.European journal of human genetics : EJHG · 2026
    Article
  2. 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

4 authors.

Pepita BarnardDepartment of Computer Science, Jubilee Campus, University of Nottingham, Wollaton Road, NG8 1BB, Nottingham, England. pepita.stringer@nottingham.ac.uk.ORCID 0000-0003-4518-1207
Sarah SharplesHorizon Digital Research Institute, Human Factors Research Group, Faculty of Engineering, University of Nottingham, University Park, NG7 2RD, Nottingham, England.
Brian J ThomsonNational Institute for Health Research, Nottingham Biomedical Research Centre, Nottingham University Hospitals NHS Trust and University of Nottingham, Nottingham, England.
Jonathan M GaribaldiDepartment of Computer Science, Jubilee Campus, University of Nottingham, Wollaton Road, NG8 1BB, Nottingham, England.

Funding

Medical Research Council MR/N005953/1
6 · The paper itself

Abstract

backgroundGenomic services are increasingly accessible to young adults starting their independent lives with responsibility for their self-care, yet their attitudes to sharing genomic information remain under-researched. This study explored attitudes of university-based 18-25 year-olds towards sharing personal whole-genome sequencing (WGS) information with relatives.

methodsWe surveyed 112 young adults. Hypotheses were tested regarding the relationships between their preferences for sharing personal WGS information with relatives and factors including their gender, previous genetics-specific education, general educational attainment level and current study in a science, technology, engineering, maths or medicine (STEMM) field.

resultsMost participants were positive about both their intention to share their WGS results with their parents and siblings, and their desire to know their relatives' results. Being female and having a university-level genetics education were consistently positively correlated with intention to share one's results with parents and with siblings as well as the desire to know relatives' results. Additionally, females who had undertaken a genetics course at university had significantly greater intentions and desires than females who had not. Lower general educational attainment was related to a lower intention to share with siblings. Participants who were in a STEMM field had a greater desire to know their relatives' results.

conclusionsParticipants' gender and prior genetics education were consistently related to their intentions to share WGS results with relatives and their desire to know relatives' results. Educational attainment was found to be positively correlated with intention to share with siblings. Being in a STEMM field was related to participants' desire to know their relatives' results. These findings indicate that gender and genetics education are particularly important influencers on young adults' stated sharing preferences. More research is required to examine the dependent variables studied to further understand their influence on attitudes to sharing WGS results. These findings are particularly interesting for information provision and support before genomic sequencing and post-results to improve the outcomes for individuals and their relatives.

Indexed as

Health Knowledge, Attitudes, PracticeInformation DisseminationSurveys and QuestionnairesUniversitiesWhole Genome SequencingFamilyFemaleHumansMalePolicy MakingYoung AdultAttitudesSharingTheory of planned behaviourWhole-genome sequencingYoung adults

Identifiers

PMID30991996
PMCPMC6469029

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.