E-Letter responses to:

p-forum: William W. Lowrance and Francis S. Collins ETHICS: Identifiability in Genomic Research Science 2007; 317: 600-602 [Summary] [Full text] [PDF]

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Identifiability in Genomic Research

John Gallacher   (13 November 2007)

Identifiability in Genomic Research 13 November 2007
John Gallacher Department of Primary Care and Public Health, Cardiff University, Cardiff CF14 4YS, UK Respond to this E-Letter: Re: Identifiability in Genomic Research	W. W. Lowrance and F. S. Collins’ article (Policy Forum, "Identifiability in genomic research," 3 August 2007, p. 600)is an object lesson in clarity, addressing complex issues succinctly and sensitively. By their own force of argument, however, their conclusions regarding data access are left wanting. Lowrance and Collins consider the concept of data enclaves as undesirable and a strategy of last resort. However, in considering enclaves under the heading of extremely restricted access, the point of a data enclave is missed. A data enclave is essentially a secure server from which data cannot be removed, at least not electronically or physically. As such, data enclaves provide the most secure environment available for the management of sensitive data. The point of data enclaves is that due to their high levels of security, providing they are accessible to scientists, they offer comparatively unrestricted environments for research. The article is written from within the cultural habit of the human genome project in which the rapid and open release of data has proven very advantageous and in which individual identities are easy to conceal and of no social or scientific importance. However, the world that the article explores is epidemiologic, where research cycles are longer and, very shortly, the data will ideally comprise complete genomes on large numbers of individuals linked to detailed clinical information. In the epidemiologic world, public confidence is everything. No confidence means no participation and no epidemiology. In a future of population-wide whole genome scans, it is virtually inconceivable that these data will be allowed to be held on non–secure servers. Public support for science, in terms of widespread participation, will require data enclaves. What is unknown is how to design and manage data enclaves to facilitate access by scientists, and enhance rather than impair the scientific enterprise. These are largely pragmatic questions and should be addressed empirically. John Gallacher Department of Primary Care and Public Health, Cardiff University, Heath Park, Cardiff CF14 4YS, UK.