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2 Law Innovation & Tech. 1 (2010)

handle is hein.journals/linovte2 and id is 1 raw text is: (2010) 2(1) Law, Innovation and Technology 1-25

The Body as Data? Biobank Regulation via
the 'Back Door' of Data Protection Law
Lee A Bygrave'
I. THE GROWING PROMINENCE OF THE HUMAN BODY
IN DATA PROTECTION DISCOURSE
Up until the last decade, the human body was largely invisible on the horizon of law and
discourse on data protection.' Much more prominent on that horizon has been the
computer. A chief concern within the field of data protection has been the impact of
computer technology on the privacy and related interests of human individuals. In this
context, attention has largely been directed at the informational rather than physical or
spatial dimensions of privacy, with the latter concept typically being defined in terms of
control over personal information. Concern for the body as such has manifested itself
mainly as a residual anxiety over what might be visited upon one's physical self as a result
of the gathering and further processing of personal information, with perhaps the
ultimate fear being the tortures meted out in Room 101 in George Orwell's dystopia,
Nineteen Eighty-Four.
Yet concern for the integrity of the physical self has often been a point of departure
for discussion about the nature and value of privacy generally. It is noteworthy, for
example, that the notion of privacy as the 'right to be let alone'-a notion championed
by Samuel Warren and Louis Brandeis in their famous Harvard Law Review article of
18904-derives from Thomas Cooley's description of the interest protected by the tort of
Associate Professor, Norwegian Research Centre for Computers and Law, Department of Private Law,
University of Oslo, Norway; Research Associate, Cyberspace Law and Policy Centre, University of New South
Wales, Sydney, Australia. All websites accessed 17 June 2010.
T The term 'data protection' is used here in its primarily European sense to denote a set of norms that
specifically regulate the processing of data relating to persons (ie, personal data) in order to safeguard, at least
partly, the privacy and related interests of those persons. Outside Europe, such norms tend rather to be
described in terms of protecting 'privacy, 'data privacy' or 'information privacy.
2  See eg Lee A Bygrave, Data Protection Law: Approaching its Rationale, Logic and Limits (Kiuwer Law
International, 2002) ch 6 and references cited therein.
3 Ibid, 128-30 and references cited therein.
4  Samuel D Warren and Louis D Brandeis,'The Right to Privacy' (1890) 4 Harvard Law, Review 193, 195.

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