REVIEWS
| Published date | 01 January 2003 |
| DOI | http://doi.org/10.1111/1468-2230.6601009 |
| Date | 01 January 2003 |
REVIEWS
Graeme Laurie, Genetic Privacy: A Challenge to Medico-Legal Norms, Cambridge:
Cambridge University Press, 2002, xxv þ335 pp, hb d50.00.
In this timely and excellent book, Graeme Laurie focuses on the circulation of
genetic information as the context within which to propose a new conception of
privacy and, at the same time, modify the ruling medico-legal paradigm (this being
centred on the principle of respect for individual autonomy and, concomitantly,
the requirement of informed consent). So, for example, one of Laurie’s recurring
themes is that we must now take seriously the claim made by some persons that
they do not want to have information about their own genome. However, to
protect such persons against unwanted inward flows of genetic information, we
must reconsider the ruling paradigm which, by virtue of being designed for
disclosure of information, supports the right to know rather than the right not to
know. Moreover, if we treat the privacy interest as the most appropriate vehicle
for the delivery of this protection, we need to articulate that interest in a way
which regulates both outward (as at present) and inward flows of genetic
information.
The book is divided into three parts. Broadly speaking, the first part is
concerned with Laurie’s proposed conception of privacy; the second part with the
right not to know (and its legal protection via privacy); and the third part with
how private interests in privacy, possibly complemented by property, might be
accommodated with the public interest in health care and the like.
Laurie defines privacy in a way that incorporates both spatial and informational
dimensions. Privacy, he says, ‘should be taken to refer to a state in which an
individual is apart from others, either in a bodily or psychological sense
[i.e. spatial privacy] or by reference to the inaccessibility of certain intimate
adjuncts to their individuality, such as personal information [i.e. informational
privacy]’ (p 6). By identifying privacy with ‘a state of separateness’, Laurie
suggests that we have ‘a neutral description of the concept of privacy’ (p 69) and,
for this reason, this approach is presented as superior to those definitions which
express privacy in terms of rights, claims, interests, or an aspect of control (pp 51–
56). Even though this initial description (or referent) is value-neutral, it does not
follow that we are precluded from attributing value to a state of privacy—indeed,
for a variety of reasons, both private and public, it is valued; nor does it follow
that there should not be legal protection for the spatial and informational interests
that it supports. However, once privacy is articulated in terms of the protection
of individual interests, its relationship with autonomy, human dignity and the like,
invites clarification. Laurie closes the first part of the book by positioning privacy
alongside liberty and autonomy, as adjuncts to human dignity, in marking out the
boundary between the individual and society (p 84); and, anticipating the
argument of the second part of the book, he suggests that privacy has the capacity
to ‘identify and protect certain human interests which liberty, autonomy and
indeed confidentiality (as an additional cousin in the family) cannot’ (p 85).
Which parts of the challenge presented by human genetics is it that privacy
alone can reach? Having outlined the current state of knowledge about human
genetics, and having considered what counts specifically as genetic information
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(not as straightforward an issue as it might seem), whether or not such
information is exceptional (again, not a straightforward matter) and who might
have an interest in such information (the individual, relatives of the individual,
employers and insurers, researchers, and the state), Laurie cuts to the chase: how
are we to deal with the (claimed) right of an individual not to know genetic
information about themselves? He contends that, if privacy is to host this right, it
must be by virtue of an interest in spatial rather than informational privacy. As
Laurie puts it, the right not to know cannot ‘be an instance of an informational
privacy interest because that interest is premised on knowledge of the existence of
the information. As we have seen, an interest in not knowing does not require such
knowledge. Rather, the interest in question is protection of the private sphere
around one’s self ’ (p 128). Now, at first blush, it seems a bit odd that an interest in
not having information about oneself is characterised in spatial rather than
informational terms. After all, if privacy is to be extended, why not treat the
informational aspect as having both a positive and a negative dimension, with the
right not to know protected under the latter? Instead, Laurie holds to the current
(narrower) conception of informational privacy and extends the spatial concep-
tion. Hence, for Laurie, if informational privacy is about keeping one’s
information to oneself as well as having access to (wanted) information about
oneself (in this latter respect qua the right to know), spatial privacy (as extended)
includes keeping (unwanted) information about oneself at a distance (qua the right
not to know). In the final analysis, I am not sure that a great deal turns on which
way this extension of privacy is taken. The more important question, to my mind,
is: why is it assumed that we cannot appeal to autonomy or confidentiality as the
basis for the right not to know? Why, that is, do we need ‘a paradigm shift in
medico-legal norms’ (p 189)?
First, why will autonomy not work? Helpfully, Laurie identifies choice as central
to autonomy (at pp 186–187). Autonomy presupposes the capacity to make one’s
own choices; to respect individual autonomy is to allow for the opportunity to
choose and to have regard to the choices made. Negatively, respect requires non-
interference; positively, respect requires information to be given to facilitate choice.
Applied to the context of genetic information, the principle of respect for
autonomy dictates that individual choices concerning genetic information are
respected (p 203). Why, then, if an individual indicates that he or she does not wish
to know genetic information about themselves, do we need to conceive of the
protection of this wish as an aspect of privacy rather than autonomy? Laurie
concedes that such a prior indication could be given and that it should be respected.
Thus, ‘This is not to say that one cannot simply state: ‘‘I wish to know no
information about my genetic make-up whatsoever’’, nor is it to suggest that such a
wish should not be respected’ (p 204). So far, so good for autonomy. However,
Laurie continues by rightly pointing out that ‘the requirement that autonomous
choices be informed choices tends to imply that the credibility of an uninformed
choice is more easily questioned. It leaves the way open for it to be argued that
actual knowledge about circumstances might nevertheless affect the chooser who
might then choose differently if furnished with relevant information’ (ibid). In
other words, the right not to know cannot be seen as an articulation of the
autonomy interest because this interest is only truly expressed (i.e. choices are only
truly autonomous) when they are made on the basis of relevant information, not
when they are made in ignorance of that information. What are we to make of this?
Certainly, there is the appearance of a paradox here. However, if we are
prepared to recognise that individuals can autonomously make strategic or
ReviewsJanuary 2003]
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