Genetic Privacy:
A Challenge to Medico-legal Norms

by Graeme Laurie

Cambridge University Press, 2002
ISBN 0 521 66027 0

Reviewed by: Dr Philip Leith
Queens University Belfast
p.leith@qub.ac.uk

1. Introduction

Laurie's problematic is the growth of the quantity of genetic information available and also the predictive value of such information from this new technology. Such information when set against the more traditional ethical values of medicine poses an attack upon these values. For example, the rhetoric of medical ethics relies - as Laurie describes - upon notions of individuality, and reasoning is based in the notion of the autonomy of the individual. With genetic information, the individual is placed in a much more 'socially-oriented' world, since that genetic information does not solely point to an individual (though it does that, too) but to a family of individuals who share that genetic information to a greater or lesser extent. The 'family' can be the close knit version, or it could be the whole of a community - with Iceland and Estonia collecting data on their populations where there is significant research interest because of the relative genetic purity of those populations.

2. Genetic Privacy

The text provides a well-written overview of the area - from initial definitions of privacy, through an introduction to the accuracy of genetic predictions arising from genetic information, covering the views of the potential parties to information use, and finally ending in property rights in such information. Laurie is generally pro-privacy, but it could not be said that he provides a path which clearly shows how he believes we should handle the problems of genetic privacy, rather that he maps out some of the potholes in that path:

The text certainly manages to highlight these varied interests and is a very useful and readable source for a better understanding of the particularly dramatic consequences to traditional views of privacy which genetics is providing.

3. Privacy Scepticism

I read the text as a 'privacy sceptic' - that is with more than a measure of critical perspective on the privacy literature. Laurie didn't persuade me away from my scepticism but did make me think more carefully about the commercial input to the privacy debate and also - since most privacy sceptics have at least a core which they believe should be generally 'private' (whatever that means) - just how difficult it is to define what we want to remove from public discussion. Without such a limited definition of privacy in medical information, it must be impossible to use legal means of enforcement, unless by a case by case listing of what is not allowed.

Laurie uses the concepts of information privacy (information about the person) and spatial privacy ('a zone of privateness surrounding the individual that cannot and should not be invaded without due cause') in his analysis. I am not quite sure what these mean, since the second appears to make recourse to some mystical element of the individual. Others have suggested that the divide is between protection for data about a person, and protection of more general nature (the 'right to be left alone'?). I am not sure whether Laurie is tapping into this or a more natural law origin.

Scepticism about privacy can grow in a number of ways. We simply need to look at the Data Protection Act 1998 and the Information Commissioner's web site. The rhetoric is that the DP Act is about privacy but when we look at the register itself, we see that there are vast amounts of information which are being kept quite correctly by various organisations. I usually show the listing of allowable uses from one of the large supermarket chains to my students - this undermines the notion that personal information is not being collected. And it's well known that the DP Act has proved useful to employers who can request potential employees to use their access rights to prove that they don't have a criminal record. What the DP Act really is - and this is useful - is a Data Verification Act (with some limited exclusions on valid use of data).

The origin of privacy is - the narrative goes - in post-war Europe where it was seen that information on individuals allowed processing of them in unwanted ways by the Nazi regime. This kind of information collection is supposed to be unwelcome today. However, in Germany information is certainly collected on the religious affiliation of each employee. This is used as a way to fund the various religions, through a payment from income. I have been told by several people in the more conservative south of the country that they would prefer not to pay this, but would worry that their employer would consider them as atheists, and they may suffer consequences.

I found Laurie's argument to further support my scepticism, most likely in ways that he too sees, but not as sceptically as I might. Thus the case of Source Informatics, where anonymised patient data was collected from pharmacists by a commercial concern to help in the marketing of their products. The Court of Appeal declined to deny this use, arguing that since it was anonymous data, it was perfectly fair use. Another, better known case, is that of John Moore, where a patient's spleen cells were taken without knowledge or consent and grown into an immortal cell-line, later sold for $15 million, and developed into an industry worth $3 billion. The patient, it was decided, had no rights over this cell line. And, from the non-medical world, the Douglas case is interesting with Sedley LJ attempting to lay the groundwork for privacy in a case which reeks of naked commercial interest.

These types of cases all have a commonality: it appears that where there is a dispute over privacy rights where there are also rights over property, that property rights will trump privacy.

4. Conclusion

Privacy is problematical and Laurie's analysis, based in the new technology of genetics, of the confusions lying at the heart of it - over confidentiality, notions of autonomy and the lack of any coherent legal definition of just what privacy is - is a highly useful addition to the literature.

This is a Book Review published on 16 August 2002.

Citation: Leith P, 'Genetic Privacy: A challenge to Medico-legal Norms, by Graeme Laurie', Book Review, The Journal of Information, Law and Technology (JILT)
2002 (2) <http://elj.warwick.ac.uk/jilt/02-2/leith.html>. New citation as at 1/1/04: <http://www2.warwick.ac.uk/fac/soc/law/elj/jilt/2002_2/leith/>.