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

Middleton, Anna ; Milne, Richard ; Thorogood, Adrian ; Kleiderman, Erika ; Niemiec, Emilia LU ; Prainsack, Barbara ; Farley, Lauren ; Bevan, Paul ; Steed, Claire and Smith, James , et al. (2019) In European Journal of Medical Genetics 62(5). p.316-323
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... (More)

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.

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publishing date
type
Contribution to journal
publication status
published
subject
in
European Journal of Medical Genetics
volume
62
issue
5
pages
316 - 323
publisher
Elsevier
external identifiers
  • pmid:30476628
  • scopus:85057562072
ISSN
1769-7212
DOI
10.1016/j.ejmg.2018.11.014
language
English
LU publication?
no
id
b3f3f216-057b-4f76-ac26-a28edb9d5754
date added to LUP
2020-12-03 14:09:22
date last changed
2021-02-23 01:37:30
@article{b3f3f216-057b-4f76-ac26-a28edb9d5754,
  abstract     = {<p>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.</p>},
  author       = {Middleton, Anna and Milne, Richard and Thorogood, Adrian and Kleiderman, Erika and Niemiec, Emilia and Prainsack, Barbara and Farley, Lauren and Bevan, Paul and Steed, Claire and Smith, James and Vears, Danya and Atutornu, Jerome and Howard, Heidi C. and Morley, Katherine I.},
  issn         = {1769-7212},
  language     = {eng},
  number       = {5},
  pages        = {316--323},
  publisher    = {Elsevier},
  series       = {European Journal of Medical Genetics},
  title        = {Attitudes of publics who are unwilling to donate DNA data for research},
  url          = {http://dx.doi.org/10.1016/j.ejmg.2018.11.014},
  doi          = {10.1016/j.ejmg.2018.11.014},
  volume       = {62},
  year         = {2019},
}