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Data sharing: not as simple as it seems.

Pearce, N. ; Smith, A.H. ;
Environ Health, 2011; 10:107
Record added: 24-01-12
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pub_id
22188646
pubmedid
22188646
ISI
299255600001
reference_type
author
Pearce, N. ; Smith, A.H. ;
title
Data sharing: not as simple as it seems.
secondary_title
Environ Health
ISBNISSN
1476-069X
volume
10
number
pages
107
year
2011
abstract
: ABSTRACT: In recent years there has been a major change on the part of funders, particularly in North America, so that data sharing is now considered to be the norm rather than the exception. We believe that data sharing is a good idea. However, we also believe that it is inappropriate to prescribe exactly when or how researchers should preserve and share data, since these issues are highly specific to each study, the nature of the data collected, who is requesting it, and what they intend to do with it. The level of ethical concern will vary according to the nature of the information, and the way in which it is collected - analyses of anonymised hospital admission records may carry a quite different ethical burden than analyses of potentially identifiable health information collected directly from the study participants. It is striking that most discussions about data sharing focus almost exclusively on issues of ownership (by the researchers or the funders) and efficiency (on the part of the funders). There is usually little discussion of the ethical issues involved in data sharing, and its implications for the study participants. Obtaining prior informed consent from the participants does not solve this problem, unless the informed consent process makes it completely clear what is being proposed, in which case most study participants would not agree. Thus, the undoubted benefits of data sharing does not remove the obligations and responsibilities that the original investigators hold for the people they invited to participate in the study.
keywords
secondary_author
place_published
publisher
number_of_volumes
tertiary_author
tertiary_title
edition
date
type_of_work
subsidiary_author
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call_number
accession_number
custom_1
WOS NEW
custom_2
0
custom_3
custom_4
10.1186/1476-069X-10-107
custom_5
custom_6
20
label
2014-06-30
notes
Editorial
url
author_address
Faculty of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, London, UK. neil.pearce@lshtm.ac.uk.
library
1476-069X-10-107 10.1186/1476-069X-10-107 22188646 PMC3260112
created
2012-01-24 10:04:52
modified
2012-03-15 18:44:28
library

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<ArticleId IdType="doi">10.1186/1476-069X-10-107</ArticleId>
<ArticleId IdType="pubmed">22188646</ArticleId>
<ArticleId IdType="pmc">PMC3260112</ArticleId>