I agree, Chris.
But inability to publish it doesn't necessarily mean inability to share/use for legitimate research purposes; we need a nuanced approach.
For example the SHIP course covers the concepts of safe data and safe outputs (these may not be possible for DNA and other sensitive personal data that can't be anonymised), but also safe projects and safe settings. An example of safe settings is the UKDA's Secure Data Service, or the Restricted Access Data Centres in some American universities. In the context of the SHIP health data, secure access is provided by ISD, Information Services Division of NHS Scotland. I think safe projects possibly gets into controversial territory, positing that confidentiality can be retained without consent through rigorous governance over disclosure – i.e. to projects deemed safe by the governance body and via safe settings only.
Another article of interest: U.K. to Open Health Records as E.U. Considers Restrictions, by Gretchen Vogel in Science, 16 December 2011: Vol. 334 no. 6062 pp. 1483-1484 DOI: 10.1126/science.334.6062.1483. Available: http://www.sciencemag.org/content/334/6062/1483.full
The Data Protection reform discussions going on now in the European Parliament are relevant here, or at least the outcomes will be. It could affect what Scotland is trying to do via SHIP and what some Scandinavian countries are doing via researcher access to their health registers as well.
James, you may want to try to contact John Bell at Oxford, former President of the Academy of Medical Sciences, who is quoted in the article.
Cheers,
Robin Rice
Data Librarian
University of Edinburgh
-----Original Message-----
From: Research Data Management discussion list [mailto:[log in to unmask]] On Behalf Of Chris Morris
Sent: 12 February 2013 11:27
Subject: DNA can't be anonymised
Hi,
In UK legal terms, my DNA sequence is sensitive personal data, and the data subjects are not only me, but also my relatives. Consent from me alone shouldn't give you the right to publish it. What is more, it can't be anonymised. Like a fingerprint, it can always lead back to me. Unlike a fingerprint, you don't necessarily need government resources to make the link, as this recent paper in Science proved:
Title: Identifying Personal Genomes by Surname Inference Science, Vol. 339, No. 6117. (18 January 2013), pp. 321-324, doi:10.1126/science.1229566 Key: citeulike:11901986
Abstract:
Sharing sequencing data sets without identifiers has become a common practice in genomics. Here, we report that surnames can be recovered from personal genomes by profiling short tandem repeats on the Y chromosome (Y-STRs) and querying recreational genetic genealogy databases. We show that a combination of a surname with other types of metadata, such as age and state, can be used to triangulate the identity of the target. A key feature of this technique is that it entirely relies on free, publicly accessible Internet resources. We quantitatively analyze the probability of identification for U.S. males. We further demonstrate the feasibility of this technique by tracing back with high probability the identities of multiple participants in public sequencing projects.
Regards,
Chris Morris
STFC
BioMedBridges Project
...
From: Gareth Knight <[log in to unmask]>
Subject: Re: Risks of de-anonymizing data
...
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
......