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Genetic privacy: a challenge to medico-legal norms
  1. D Dickenson

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    G Laurie. Cambridge University Press, 2002, £50.00 (hbk), pp 335. ISBN 0521660270

    The conflation of autonomy with consent that is typical of current approaches to medicolegal dilemmas reduces the means of respecting individuals to one solitary event—the obtaining of informed consent… [which] means that informed consent has come to be the primary, and arguably the only, legitimate way of empowering individuals in their dealings with health care professionals and researchers. This is also true in the spheres of intellectual property and biotechnology. But this need not and should not be so (p 310).

    The above quotation illustrates the jurisprudential depth and philosophical reach of the arguments in what might be wrongly assumed to be a technical treatise on confidentiality concerning genetic data. Developing a wider notion of property rights in the person, Laurie offers prescriptions of potentially enormous relevance to current debates in public policy, including the deliberations of the Retained Organs Commission and the simultaneous wider Department of Health consultation Human Bodies, Human Choices. My own view is that precisely what is wrong with the DOH consultation document is that it views informed consent as the be all and end all in patient empowerment. Properly understood, property rights in the person can function as a useful partner to informed consent in protecting vulnerable individuals and groups from unauthorised taking. (Indeed, this view—similar to Laurie’s—does underpin another recent policy document, the Human Genetics Commission’s May 2002 report Inside Information, the report of a working group chaired by Laurie’s Edinburgh colleague Alexander McCall Smith.)

    Laurie divides his book into three sections, the first an extended discussion of what basis there may be for attaching value to privacy in health care. The second of the two chapters in this section, “Privacy: antisocial concept or fundamental right?”, includes a neatly analytical section on the feminist critique of privacy, which comes as a pleasant surprise on two counts. It is still unjustifiably rare to see feminist theory picked up and used in non-feminist texts, and the first chapter gives little reason to expect anything other than the conventional interpretation of privacy as intertwined with fundamental democratic freedoms. Indeed, at times in the early pages of the book Laurie sounds rather worryingly Thatcherite: “it is the development of a public interest in the welfare of individuals that has proved to be one of the greatest threats to individual privacy in the last century... . Western societies are typified by a glut of legislation stemming from paternalistic attitudes of the state towards its citizens” (p 9). These already large generalisations are outdone a few pages later, with such assertions as “The rise of Western liberal democracy has spawned a very egocentric society”, and an ensuing diatribe against the “cult of the body” and health promotion more generally (p 11). What begins to sound like the ramblings of a crank is mercifully brief, but this first section does detract unnecessarily from the overall high analytical level of the book. Laurie appears to view it as imperative to begin this way in order to justify his choice of the health care setting as a context for his discussion of genetic privacy, but surely the issues on which the rest of the book concentrates are serious enough not to require any such tendentious justification. Even though Laurie maintains that “one sign of a democratic system is the extent to which the state takes an interest in the lives of individuals” (p 16), it is well to remember that Stalin took quite a definite interest in the private lives of his people.

    By the end of the second chapter Laurie has come to a more measured evaluation of privacy, making good use of the sceptical arguments offered by feminism and communitarianism. He acknowledges that privacy—not to be equated simply with confidentiality—is an amorphous concept, but correctly remarks that the indeterminacy of the concept “should not lead to the conclusion that it should go unprotected by law or that it cannot be so protected. Many ill defined and indeterminate terms—such as good faith, recklessness, the public interest, and the reasonable man—are used in the law” (p 51). (Indeed, one might add, the common law is bound to develop such vague definitions by the process of accretion of cases which is its fundamental dynamic.) He now begins to develop his original concept of privacy as a state of separateness from others, which can be extended in the usual way to personal information as “an intimate adjunct to individual personality” (p 64). In particular he concentrates on a notion of “spatial privacy”, conceived, however, as a supplement to the more familiar notion of informational privacy.

    As a zone of privateness surrounding the individual, spatial privacy should not be invaded without due cause, but those sorts of invasions can be either physical—as in an unauthorised treatment—by unwarranted observation, or—crucially—by the revelation of genetic data to a patient, whether or not she wants to know. Protecting the right not to know is notoriously difficult through the usual channels of informed consent, since giving the patient the right “not to know” usually requires telling her something about whatever information is concerned—by which time the right “not to know” has already been breached. What Laurie seeks to do with his notion of spatial privacy is to provide another means of protecting that right, in a manner that does not depend entirely on the notion of informed consent. In a footnote he belatedly acknowledges that invasion of the right not to know can come from private corporations as well as from government, and that there “the greatest current threat to privacy now comes from private enterprise and not the state” (p 66).

    Section two of the book dissects the existing models relating to confidentiality and privacy in genetic information, moving on to “a new privacy paradigm” in section three. Throughout Laurie smoothly integrates case law, consultative commission reports, professional guidelines, and statutes with recent developments in genetic testing and screening; the book would be worth having for its wealth of information alone, even without the more philosophical analysis. That analysis is sometimes very perceptive indeed, as when Laurie remarks that the risk of discrimination arising from misuse of genetic information “is as much a threat whether or not there is any scientific or logical basis for the belief that differences are meaningfully discernible. The potential for harm arises out of the perception that there is a difference, not out of the essential nature of the information that is seen to justify the differential treatment” (p 108).

    Chapter six “Privacy and property?”, contains the most original and far reaching of Laurie’s analyses, his attempt to reformulate the concept of privacy to rectify its usual negative nature, as a right of non-interference rather than a positive entitlement. Here Laurie draws on examples from other legal systems, such as the German statute of 1993 (Personlichkeitsrecht) protecting the body as an aspect of the right to personality, so that unauthorised taking of tissue can be prosecuted as a breach of this law. Many of the muddles in our own Anglo-American (non)-system of property in the body may be merely historical rather than inevitable; in the wake of the Alder Hey scandal, and, more positively, in a period of intensive governmental scrutiny of how patients and their families can be protected against such unauthorised takings of organs and tissue, a great deal can be learned from other jurisdictions. What can be said of tissue can also, by indirect parallel, be said of genetic information, and Laurie argues cogently for extending the narrow range of intellectual property rights to protect individuals as well as their more usual beneficiaries, researchers, funders, and universities. This, he asserts, is the only way to stem “an undeniable public crisis of confidence in genetic research, even though the promise of great benefits is well recognised” (p 309). This atmosphere of mistrust will not be dispelled only by invoking the gift model—since a one way gift, as I have argued elsewhere,1 is better termed exploitation—or by the related stratagem of ensuring a properly informed consent to “downstream” uses of genetic information or tissue. Reviewing a series of related developments towards a coherent property model, Laurie concludes that protection of the personality can best be effected by combining the property and consent models, rather than by viewing them as mutually inconsistent.