Hello James,
A key document to refer to is the Information Commissioner Office Anonymisation Code of Practice, which was updated a few months ago.
http://www.ico.gov.uk/for_organisations/guidance_index/data_protection_and_privacy_and_electronic_communications.aspx#anon
On the basis of the ICO guidance, researchers should be encouraged to take a consolidatory approach that minimises the risk of participant identification through combination with other recognisable sources, but provides sufficient information to understand the research.
As a side-note, a recent NY Times article on use of DNA sequences (http://www.nytimes.com/2013/01/18/health/search-of-dna-sequences-reveals-full-identities.html) highlights the potential for identifying larger groups of people, including family members who were not part of the study. I'm not sure of the legal implications, but it would be useful to mention as a topic for discussion.
Regards,
Gareth
--
Gareth Knight
Manager,
Research Data Management Support Service
London School of Hygiene & Tropical Medicine (LSHTM)
Keppel Street, London, WC1E 7HT
Telephone: (+44) 020 7927 2564
www.lshtm.ac.uk/library http://lshtmlib.blogspot.com/
@LSHTMlibrary @LSHTMarchives
>>> James Wilson <[log in to unmask]> 11/02/2013 14:37 >>>
Dear Colleagues,
Here at the Damaro Project we've started fretting about the increased risk of anonymized medical (& social sciences) data being de-anonymized as more and more datasets become available and the opportunities for cross-searching increase. We'll be preparing some RDM training for medical researchers shortly, and it would be good if we knew a bit more about the issues involved. Is this even something worth worrying about (I'm not very familiar with medical data)? Could any of you point us in the direction of any advice?
Yours All,
James
---
Dr. James A. J. Wilson,
Project Manager, DaMaRO Project
University of Oxford IT Services,
13 Banbury Road, Oxford. OX2 6NN
Tel. (01865) 613489
email: [log in to unmask]
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