Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries

被引：0

作者：

Richard Milne

Katherine I. Morley

Mohamed A. Almarri

Shamim Anwer

Jerome Atutornu

Elena E. Baranova

Paul Bevan

Maria Cerezo

Yali Cong

Alessia Costa

Christine Critchley

Josepine Fernow

Peter Goodhand

Qurratulain Hasan

Aiko Hibino

Gry Houeland

Heidi C. Howard

S. Zakir Hussain

Charlotta Ingvoldstad Malmgren

Vera L. Izhevskaya

Aleksandra Jędrzejak

Cao Jinhong

Megumi Kimura

Erika Kleiderman

Brandi Leach

Keying Liu

Deborah Mascalzoni

Álvaro Mendes

Jusaku Minari

Dianne Nicol

Emilia Niemiec

Christine Patch

Jack Pollard

Barbara Prainsack

Marie Rivière

Lauren Robarts

Jonathan Roberts

Virginia Romano

Haytham A. Sheerah

James Smith

Alexandra Soulier

Claire Steed

Vigdis Stefànsdóttir

Cornelia Tandre

Adrian Thorogood

Torsten H. Voigt

Nan Wang

Anne V. West

Go Yoshizawa

Anna Middleton

机构：

[1] Wellcome Connecting Science,Society and Ethics Research Group

[2] University of Cambridge,Department of Public Health and Primary Care

[3] RAND Europe,Centre for Epidemiology and Biostatistics, Melbourne School of Global and Population Health

[4] Institute of Psychiatry,Department of Forensic Science and Criminology

[5] Psychology & Neuroscience,Medical Ethics Program

[6] King’s College London,Department of Psychological Sciences

[7] The University of Melbourne,Centre for Law and Genetics

[8] Wellcome Sanger Institute,Centre for Research Ethics & Bioethics (CRB)

[9] Dubai Police GHQ,Department of Genetics & Molecular Medicine

[10] Keynote IAS,Faculty of Humanities and Social Sciences

[11] Russian Medical Academy of Continuous Professional Education,Medical Ethics

[12] EMBL-EBI,Department of Public Health and Caring Scienec

[13] Peking University Health Science Center,Department of Molecular Medicine and Surgery

[14] Swinburne University of Technology,Department of Epidemiology and Biostatistics, School of Health Sciences

[15] University of Tasmania,Institute of Innovation Research

[16] Uppsala University,Centre of Genomics and Policy

[17] Ontario Institute for Cancer Research,Public Health, Department of Social Medicine

[18] MaRS Centre,School of Public Health

[19] Kamineni Hospitals,Uehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application (CiRA)

[20] SAAZ Genetics,Genomics England

[21] Hirosaki University,Department of Political Science

[22] Lund Universitet,Department of Global Health & Social Medicine

[23] Uppsala University,Institute of Sociology

[24] Karolinska Institutet,Work Research Institute (AFI)

[25] Research Centre for Medical Genetics,Faculty of Education

[26] Independent Scholar,undefined

[27] Wuhan University,undefined

[28] Hitotsubashi University,undefined

[29] McGill University,undefined

[30] Osaka University Graduate School of Medicine,undefined

[31] Peking University Health Science Center,undefined

[32] EURAC,undefined

[33] Institute of Biomedicine,undefined

[34] UnIGENe and CGPP – Centre for Predictive and Preventive Genetics,undefined

[35] IBMC – Institute for Molecular and Cell Biology,undefined

[36] i3S – Instituto de Investigação e Inovação em Saúde,undefined

[37] Universidade do Porto,undefined

[38] Kyoto University,undefined

[39] Queen Mary University of London,undefined

[40] University of Vienna,undefined

[41] King’s College London,undefined

[42] DILTEC,undefined

[43] Sorbonne Nouvelle,undefined

[44] Landspitali,undefined

[45] the National University Hospital of Iceland,undefined

[46] RWTH Aachen University,undefined

[47] Indiana University Maurer School of Law,undefined

[48] Oslo Metropolitan University,undefined

[49] University of Cambridge,undefined

来源：

Genome Medicine | / 13卷

关键词：

D O I：

暂无

中图分类号：

学科分类号：

摘要：

引用

共 50 条

[31] When more is better: how data sharing would accelerate genomic selection of crop plants
Spindel, Jennifer E.
McCouch, Susan R.
NEW PHYTOLOGIST, 2016, 212 (04) : 814 - 826
[32] Sharing public health data and information across borders: lessons from Southeast Asia
Liverani, Marco
Teng, Srey
Minh Sat Le
Coker, Richard
GLOBALIZATION AND HEALTH, 2018, 14
[33] Sharing public health data and information across borders: lessons from Southeast Asia
Marco Liverani
Srey Teng
Minh Sat Le
Richard Coker
Globalization and Health, 14
[34] Public attitudes towards genomic data sharing: results from a provincial online survey in Canada
Etchegary, Holly
Darmonkov, Georgia
Simmonds, Charlene
Pullman, Daryl
Rahman, Proton
BMC MEDICAL ETHICS, 2023, 24 (01)
[35] Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia
Milne, Richard
Morley, Katherine I.
Howard, Heidi
Niemiec, Emilia
Nicol, Dianne
Critchley, Christine
Prainsack, Barbara
Vears, Danya
Smith, James
Steed, Claire
Bevan, Paul
Atutornu, Jerome
Farley, Lauren
Goodhand, Peter
Thorogood, Adrian
Kleiderman, Erika
Middleton, Anna
HUMAN GENETICS, 2019, 138 (11-12) : 1237 - 1246
[36] Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review
Shabani, Mahsa
Bezuidenhout, Louise
Borry, Pascal
EXPERT REVIEW OF MOLECULAR DIAGNOSTICS, 2014, 14 (08) : 1053 - 1065
[37] Public attitudes towards genomic data sharing: results from a provincial online survey in Canada
Holly Etchegary
Georgia Darmonkov
Charlene Simmonds
Daryl Pullman
Proton Rahman
BMC Medical Ethics, 24
[38] Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia
Richard Milne
Katherine I. Morley
Heidi Howard
Emilia Niemiec
Dianne Nicol
Christine Critchley
Barbara Prainsack
Danya Vears
James Smith
Claire Steed
Paul Bevan
Jerome Atutornu
Lauren Farley
Peter Goodhand
Adrian Thorogood
Erika Kleiderman
Anna Middleton
Human Genetics, 2019, 138 : 1237 - 1246
[39] Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence
Kalkman, Shona
van Delden, Johannes
Banerjee, Amitava
Tyl, Benoit
Mostert, Menno
van Thiel, Ghislaine
JOURNAL OF MEDICAL ETHICS, 2022, 48 (01) : 3 - 13
[40] GA4GH: International policies and standards for data sharing across genomic research and healthcare
Rehm, Heidi L.
Page, Angela J. H.
Smith, Lindsay
Adams, Jeremy B.
Alterovitz, Gil
Babb, Lawrence J.
Barkley, Maxmillian P.
Baudis, Michael
Beauvais, Michael J. S.
Beck, Tim
Beckmann, Jacques S.
Beltran, Sergi
Bernick, David
Bernier, Alexander
Bonfield, James K.
Boughtwood, Tiffany F.
Bourque, Guillaume
Bowers, Sarion R.
Brookes, Anthony J.
Brudno, Michael
Brush, Matthew H.
Bujold, David
Burdett, Tony
Buske, Orion J.
Cabili, Moran N.
Cameron, Daniel L.
Carroll, Robert J.
Casas-Silva, Esmeralda
Chakravarty, Debyani
Chaudhari, Bimal P.
Chen, Shu Hui
Cherry, J. Michael
Chung, Justina
Cline, Melissa
Clissold, Hayley L.
Cook-Deegan, Robert M.
Courtot, Melanie
Cunningham, Fiona
Cupak, Miro
Davies, Robert M.
Denisko, Danielle
Doerr, Megan J.
Dolman, Lena I.
Dove, Edward S.
Dursi, L. Jonathan
Dyke, Stephanie O. M.
Eddy, James A.
Eilbeck, Karen
Ellrott, Kyle P.
Fairley, Susan
CELL GENOMICS, 2021, 1 (02):

← 1 2 3 4 5 →