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Eur J Med Genet. 2018 Nov 23. pii: S1769-7212(18)30731-6. doi: 10.1016/j.ejmg.2018.11.014. [Epub ahead of print]

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

Author information

1
Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK; Faculty of Education, University of Cambridge, Cambridge, UK. Electronic address: am33@sanger.ac.uk.
2
Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK; Institute of Public Health, University of Cambridge, Cambridge, UK.
3
Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
4
Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
5
Department of Political Science, University of Vienna, Austria; Department of Global Health & Social Medicine, King's College London, UK.
6
Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK.
7
Web Team, Wellcome Sanger Institute, Wellcome Genome Campus, Cambridge, UK.
8
Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium; Melbourne Law School, The University of Melbourne, Melbourne, Australia; Biomedical Ethics Research Group, Murdoch Children's Research Institute, Parkville, Australia.
9
Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK; Faculty of Education, University of Cambridge, Cambridge, UK; School of Health Sciences, University of Suffolk, Ipswich, UK.
10
Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK; Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
11
Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK; Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, UK; Centre for Epidemiology and Biostatistics, Melbourne School of Global and Population Health, The University of Melbourne, Melbourne, Australia.

Abstract

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.

PMID:
30476628
DOI:
10.1016/j.ejmg.2018.11.014
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