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6 Eur. J. Health L. 119 (1999)
In Defence of Ignorance: Genetic Information and the Right Not to Know

handle is hein.journals/eurjhlb6 and id is 129 raw text is: European Journal of Health Law 6:119-132, 1999.                   119
© 1999 Kluwer Law InternationaL Printed in the Netherlands.
In Defence of Ignorance: Genetic Information and the Right
not to Know
LL.B Ph.D, Faculty of Law, University of Edinburgh, Scotland.
This article considers two concepts which have for a long time received short
shrift in the field of medical law and ethics: ignorance and privacy. By
'ignorance' is not meant wilful blindness or lamentable ill-education, but
rather, a simple state of no(n)-knowledge. 'Privacy' refers to a state of non-
access in which an individual is separate from others and where her interests
are paramount. This state of privacy comprises two elements: informational
privacy and spatial privacy.
Informational privacy is concerned with the control of personal
information and with preventing access to that information by others.
Informational privacy is invaded when information is disclosed without
authority. This concept is familiar to all of us and is protected, inter alia, by
legal and ethical duties of confidentiality. Spatial privacy, on the other hand,
ensures that the individual herself is in a state of non-access. An obvious
example of this is physical separateness from others - physical spatial
privacy is invaded when one's physical sphere is invaded - if, for example,
we are not permitted to be alone. However, spatial privacy also encompasses
separateness of the individual's psyche - and what might be called
'psychological' spatial privacy can be invaded in myriad ways: by someone
talking too loudly on the train, by neighbours who fight continuously or by
friends who ask impertinent questions. This aspect of spatial privacy protects
one's own sense of the self. 'Self' is, after all, a psychological construct which
is built through the interaction of a number of factors; these may be internal
to an individual, such as physiological and genetic make-up or subjective
feelings of worth and contentment, or external, such as experiences of other
human beings and, indeed, the world generally. Yet external influences
incontrovertibly remain outside the control of each of us and at times might

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