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If you build it, they will come: unintended future uses of organised health data collections

Overview of attention for article published in BMC Medical Ethics, September 2016
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About this Attention Score

  • In the top 5% of all research outputs scored by Altmetric
  • Among the highest-scoring outputs from this source (#22 of 681)
  • High Attention Score compared to outputs of the same age (96th percentile)

Mentioned by

news
3 news outlets
blogs
2 blogs
twitter
34 tweeters
facebook
1 Facebook page

Readers on

mendeley
47 Mendeley
citeulike
1 CiteULike
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Title
If you build it, they will come: unintended future uses of organised health data collections
Published in
BMC Medical Ethics, September 2016
DOI 10.1186/s12910-016-0137-x
Pubmed ID
Authors

Kieran C. O’Doherty, Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A. Koenig, Donald J. Willison

Abstract

Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data sensors Ethical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections. Although health research conducted using these collections is broadly recognized as beneficent, secondary uses of these data and samples may be controversial. We examine both documented and hypothetical scenarios of secondary uses of health data and samples. In particular, we focus on the use of health data for purposes of: Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Current safeguards relating to the use of health data and samples include research ethics oversight and privacy laws. These safeguards have a strong focus on informed consent and anonymization, which are aimed at the protection of the individual research subject. They are not intended to address broader societal implications of health data and sample collections. As such, existing arrangements are insufficient to protect against subversion of health databases for non-sanctioned secondary uses, or to provide guidance for reasonable but controversial secondary uses. We are concerned that existing debate in the scholarly literature and beyond has not sufficiently recognized the secondary data uses we outline in this paper. Our main purpose, therefore, is to raise awareness of the potential for unforeseen and unintended consequences, in particular negative consequences, of the increased availability and development of health data collections for research, by providing a comprehensive review of documented and hypothetical non-health research uses of such data.

Twitter Demographics

The data shown below were collected from the profiles of 34 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 47 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 47 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 11 23%
Student > Ph. D. Student 6 13%
Student > Bachelor 5 11%
Researcher 5 11%
Student > Doctoral Student 3 6%
Other 8 17%
Unknown 9 19%
Readers by discipline Count As %
Computer Science 8 17%
Social Sciences 6 13%
Business, Management and Accounting 3 6%
Psychology 3 6%
Nursing and Health Professions 3 6%
Other 11 23%
Unknown 13 28%

Attention Score in Context

This research output has an Altmetric Attention Score of 63. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 31 March 2020.
All research outputs
#340,440
of 15,467,277 outputs
Outputs from BMC Medical Ethics
#22
of 681 outputs
Outputs of similar age
#10,263
of 266,223 outputs
Outputs of similar age from BMC Medical Ethics
#1
of 1 outputs
Altmetric has tracked 15,467,277 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 97th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 681 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 11.5. This one has done particularly well, scoring higher than 96% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 266,223 tracked outputs that were published within six weeks on either side of this one in any source. This one has done particularly well, scoring higher than 96% of its contemporaries.
We're also able to compare this research output to 1 others from the same source and published within six weeks on either side of this one. This one has scored higher than all of them