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In defence of privacy

18 November 2013
By Dr Stuart Hogarth
Senior research fellow at King's College London
Appeared in BioNews 731

Last week saw the launch of the UK arm of the Personal Genome Project (PGP). This is the second major sequencing initiative launched this year in the UK (the first being Genomics England). Interestingly, both projects seek to sequence 100,000 genomes, and both are fuelled by a belief that genomics is set to become a routine part of healthcare. Yet the projects are as notable for their differences as their similarities.

Genomics England is bankrolled by the government, with £100 million of NHS funds earmarked for the project. The source of funding for PGP is rather more disparate, with the PHG Foundation reporting that it is to be funded for the next year 'by the Chinese Beijing Genomics Institute (BGI) and commercial sequencing and interpretation service providers Illumina, Life Technologies, and Personalis'.

Whether it can secure long-term funding is not clear, with Science Insider reporting that the more established US and Canadian arms are struggling for funding. Another difference is in their approach to confidentiality: PGP operates on the principle that research participants share their data publicly.

Controversy surrounding protecting the privacy of genetic research participants heightened after the 2008 publication by Homer et al demonstrating a new technique which allowed them to re-identify genotyped individuals or even individuals in pooled mixtures of DNA. The publication immediately led research funders including the US National Institutes of Health and the Wellcome Trust to place new restrictions on access to data from genome wide association studies (GWAS).

Genetic epidemiology, like most other biomedical research, has hitherto operated according to a norm that seeks to ensure that research subjects are protected by the cloak of anonymity. As far as I am aware, this remains the case for most genomic research. The ethics and governance framework of the UK Biobank, our flagship initiative in this research field, states that the organisation 'is committed to protecting the confidentiality of data and samples'. Our other flagship initiative is Genomics England, an organisation whose governance framework is still in development but which has already promised to 'strictly manage secure storage of personal data in accordance with existing NHS rules designed to securely protect patient information'.

I am unconvinced by the argument that the PGP’s public disclosure policy is the best response to the difficulties of safeguarding genomic confidentiality. In a recent review of this issue, Greenbaum et al provided an alternative perspective: 'Another approach could be to learn from the legal and banking sectors wherein privacy and confidentiality are protected while the practitioners nevertheless manipulate and analyze large databases of highly confidential personal and financial data. Furthermore, private information is exchanged between many organizations ranging from large companies to small law firms. In those cases, incentives to keep clients, as well as governmental regulations with stiff penalties and civil and criminal repercussions, help to prevent breaches of customer privacy'.

This carrot-and-stick approach is not a 100 percent guarantee of good behaviour: when the incentives are strong enough, as is the case with insider trading, then individuals may break the law. But it does provide a significant measure of protection for individuals and corporations from the malicious abuse or careless disclosure of their confidential data, and, as importantly, it provides legislative support to the principle that such protection is a reasonable expectation.

In the era of big data, the governance of personal information requires the robust defence of such principles.

25 April 2016 - by Dr Barbara Prainsack 
A recent Wellcome Trust report says the public are worried about the 'one-way mirror', which allows companies full access to health data while the public know little about what they are doing with it and whom they're sharing it with...
3 March 2014 - by Karen Birmingham 
The eight professors, including two Knights, who contributed to this event, were given a relatively easy time by the public, possibly because there was little time for questions or perhaps because the case for mass genotyping projects had been convincing...
11 November 2013 - by Simon Hazelwood-Smith 
The UK branch of the Personal Genome Project has launched, with the aim of sequencing the genomes of 100,000 British volunteers...
28 October 2013 - by Dr Lucy Freem 
A three-year joint project to sequence the genomes of 10,000 rare disease patients has been announced by the University of Cambridge, Genomics England and Illumina...
7 October 2013 - by Rhys Baker 
The Prime Minister, David Cameron, has announced a new partnership between Genomics England and Cancer Research UK as part of a Government bid to make the UK the first country in the world to sequence 100,000 genomes within five years....
9 September 2013 - by Dr James Heather 
The US National Institutes of Health has unveiled plans to trial sequencing the DNA of newborn babies, to test if it could improve paediatric medical care...
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