cover image: Sharing health data: good intentions are not enough

20.500.12592/2njgbp

Sharing health data: good intentions are not enough

1 Jun 2010

Researchers and governments are also reluc- the interests of public health researchers in direct conflict with tant to see the data they provide used and manipulated by others the interests of public health. [...] The two largest funders of the It is irrational to invest so much in col- then can’t afford.24 Human Genome Project, the Wellcome lecting data and yet so little in ensuring Feelings of ownership over hard-won Trust and the National Institutes for that we make the best use of it.13 It is also data, viscerally held even by researchers Health, invested massively in the infra- ethically unsound; peopl [...] In part expect researchers to make the data that centuries later, the data would be an im- because of the development of research underlie research articles available to oth- portant source of information for climate tissue banks (biobanks), broad consent ers on request. [...] This calls for a business or maintain that the major constraints to feasibility are a cultural resistance to Fill the gaps in data management funding model that assures the long-term viability of data archives. [...] But none are willing Here we propose several goals to which a range of repositories, and standards to take charge of the agenda, commit- funders and researchers can jointly as- for repositories similar to those used for ting themselves to orchestrating the dull, pire and towards which progress can be registries of clinical trials.26 We also need messy but essential work of developing the measured:
round table

Authors

Pisani, Elizabeth, AbouZahr, Carla

DOI
http://dx.doi.org/10.2471/BLT.09.074393
ISSN
0042-9686
PMC
PMC2878150
Published in
Switzerland
pubmed
20539861