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Record W4210554604 · doi:10.1016/j.gim.2022.01.002

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

2022· article· en· W4210554604 on OpenAlexafffund
Richard Milne, Katherine I. Morley, Mohamed A. Almarri, Jerome Atutornu, Elena E. Baranova, Paul Bevan, María Cerezo, Yali Cong, Alessia Costa, Carolina Feijao, Cláudia de Freitas, Josepine Fernow, Peter Goodhand, Qurratulain Hasan, Aiko Hibino, Gry Houeland, Heidi Howard, Zakir Hussain Sheikh, Charlotta Ingvoldstad Malmgren, Vera L. Izhevskaya, Aleksandra Jędrzejak, Jinhong Cao, Megumi Kimura, Erika Kleiderman, Keying Liu, Deborah Mascalzoni, Álvaro Mendes, Jusaku Minari, Dianne Nicol, Emilia Niemiec, Christine Patch, Barbara Prainsack, Marie Rivière, Lauren Robarts, Jonathan Roberts, Virginia Romano, Haytham A. Sheerah, James Smith, A Soulier, Claire Steed, Vigdís Stefánsdóttir, Cornelia Tandre, Adrian Thorogood, Torsten H. Voigt, Nan Wang, Go Yoshizawa, Anna Middleton

Bibliographic record

VenueGenetics in Medicine · 2022
Typearticle
Languageen
FieldMedicine
TopicEthics in Clinical Research
Canadian institutionsMcGill UniversityOntario Institute for Cancer Research
FundersUppsala UniversitetPeking UniversityUniversidade do PortoHirosaki UniversityRWTH Aachen UniversityKarolinska InstitutetChalmers Tekniska HögskolaPeking University Health Science CenterUniversität WienWuhan UniversityUniversity of MelbourneUniversity of TasmaniaUniversité du LuxembourgKing's College LondonEuropean Bioinformatics InstituteUniversität zu LübeckFaculty of Medicine, McGill UniversityMcGill UniversityQueen Mary University of LondonInternational Business Machines Corporation
KeywordsOddsVariation (astronomy)World Values SurveyPsychologyDemographic economicsMedicineSocial psychologyLogistic regressionEconomics

Abstract

fetched live from OpenAlex

PURPOSE: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. METHODS: We analyzed the "Your DNA, Your Say" online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. RESULTS: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. CONCLUSION: There is substantial international variation in the extent to which the RoR may motivate people's intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants' preferences for return of genomic results globally should be considered.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.032
metaresearch head score (Gemma)0.040
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch, Research integrity
Consensus categoriesMetaresearch
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Qualitative · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.232
Threshold uncertainty score1.000

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0320.040
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0010.001
Science and technology studies0.0000.001
Scholarly communication0.0000.000
Open science0.0010.001
Research integrity0.0000.003
Insufficient payload (model declined to judge)0.0000.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.657
GPT teacher head0.644
Teacher spread0.014 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; both teacher heads agree on what is shown here.

Study designQualitative
Domainnot available
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations12
Published2022
Admission routes2
Has abstractyes

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