TY - JOUR

T1 - Attitudes of publics who are unwilling to donate DNA data for research

AU - Middleton, Anna

AU - Milne, Richard

AU - Thorogood, Adrian

AU - Kleiderman, Erika

AU - Niemiec, Emilia

AU - Prainsack, Barbara

AU - Farley, Lauren

AU - Bevan, Paul

AU - Steed, Claire

AU - Smith, James

AU - Vears, Danya

AU - Atutornu, Jerome

AU - Howard, Heidi C.

AU - Morley, Katherine I.

N1 - Funding Information: This work was supported by Wellcome grant [ 206194 ] paid to AM, LF, KIM, RM via Wellcome Genome Campus Society and Ethics Research Group , Connecting Science. We would like to thank the following people from GA4GH for their encouragement and infrastructure support: Peter Goodhand, Julia Wilson, Bartha Knoppers. This work was also supported by Global Alliance for Genomics and Health , with their funding delivered via Wellcome ( GA4GH grant, with thanks to Audrey Duncansen). DV acknowledges the infrastructure funding received from the Victorian State Government through the Operational Infrastructure Support (OIS) Program. Funding Information: This work was supported by Wellcome grant [206194] paid to AM, LF, KIM, RM via Wellcome Genome Campus Society and Ethics Research Group, Connecting Science. We would like to thank the following people from GA4GH for their encouragement and infrastructure support: Peter Goodhand, Julia Wilson, Bartha Knoppers. This work was also supported by Global Alliance for Genomics and Health, with their funding delivered via Wellcome (GA4GH grant, with thanks to Audrey Duncansen). DV acknowledges the infrastructure funding received from the Victorian State Government through the Operational Infrastructure Support (OIS) Program. Publisher Copyright: © 2018 The Authors

PY - 2019/5

Y1 - 2019/5

N2 - With the use of genetic technology, researchers have the potential to inform medical diagnoses and treatment in actionable ways. Accurate variant interpretation is a necessary condition for the utility of genetic technology to unfold. This relies on the ability to access large genomic datasets so that comparisons can be made between variants of interest. This can only be successful if DNA and medical data are donated by large numbers of people to ‘research’, including clinical, non-profit and for-profit research initiatives, in order to be accessed by scientists and clinicians worldwide. The objective of the ‘Your DNA, Your Say’ global survey is to explore public attitudes, values and opinions towards willingness to donate and concerns regarding the donation of one's personal data for use by others. Using a representative sample of 8967 English-speaking publics from the UK, the USA, Canada and Australia, we explore the characteristics of people who are unwilling (n = 1426) to donate their DNA and medical information, together with an exploration of their reasons. Understanding this perspective is important for making sense of the interaction between science and society. It also helps to focus engagement initiatives on the issues of concern to some publics.

AB - With the use of genetic technology, researchers have the potential to inform medical diagnoses and treatment in actionable ways. Accurate variant interpretation is a necessary condition for the utility of genetic technology to unfold. This relies on the ability to access large genomic datasets so that comparisons can be made between variants of interest. This can only be successful if DNA and medical data are donated by large numbers of people to ‘research’, including clinical, non-profit and for-profit research initiatives, in order to be accessed by scientists and clinicians worldwide. The objective of the ‘Your DNA, Your Say’ global survey is to explore public attitudes, values and opinions towards willingness to donate and concerns regarding the donation of one's personal data for use by others. Using a representative sample of 8967 English-speaking publics from the UK, the USA, Canada and Australia, we explore the characteristics of people who are unwilling (n = 1426) to donate their DNA and medical information, together with an exploration of their reasons. Understanding this perspective is important for making sense of the interaction between science and society. It also helps to focus engagement initiatives on the issues of concern to some publics.

UR - http://www.scopus.com/inward/record.url?scp=85057562072&partnerID=8YFLogxK

U2 - 10.1016/j.ejmg.2018.11.014

DO - 10.1016/j.ejmg.2018.11.014

M3 - Journal article

C2 - 30476628

AN - SCOPUS:85057562072

VL - 62

SP - 316

EP - 323

JO - European Journal of Medical Genetics

JF - European Journal of Medical Genetics

SN - 1769-7212

IS - 5

ER -