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inadequate but  authoritative evidence given by expert witnesses).
However, it would be odd, even perverse, to argue that those who are
competent and epistemically responsible should be prohibited from
acquiring, using or communicating information of some type when-
ever some others are incapable of doing so. What is needed is not a
blanket prohibition on acquiring, using or communicating genetic
(or any other sort of ) information, but appropriate institutional
There is considerable debate about these issues which might loosely fall under the
rubric: public understanding of science (but note that one of the issues is whether
it is public understanding that is the goal, or increased trust, or improved avenues
for public engagement with the work of scientists prior to the development and
application of scientific and technological innovation). Colin Blakemore,
 Cultivating a Thousand Flowers , Journal of the Foundation for Science and
Technology 18 (2005), 10 11; and the report by the think-tank Demos: See-through
Science: Why Public Engagement Needs to Move Upstream by Rebecca Willis
and James Wilsdon (2004), available at http://www.demos.co.uk/catalogue/
144 Rethinking Informed Consent in Bioethics
mechanisms for ensuring that those who do so are epistemically
competent and responsible, particularly when they use the informa-
tion in ways that may have serious effects.13
Two further points count against basing a defence of genetic
exceptionalism on claims about received views and attitudes. The
first is that genetic exceptionalism, if framed in terms of rights to
control a class of information, may be incoherent  so impossible to
implement  for the very reasons outlined above. The second point is
that the claim that people have a very poor understanding of genetics
sits uneasily with the assumption that informed consent is necessary
for the ethically sound use of genetic information. These two claims
raise the problem noted in Chapter 1. How can people give full,
explicit and specific consent to acts that are technical and complex, of
which they do not have a good understanding? How can people give
adequate consent to acts that use genetic information if (as is
acknowledged) they have false beliefs about genetic information or
understand it poorly? The exceptionalist seems to hold both (a) that
most people s lack of understanding of facts about genetics imposes
special obligations upon those who acquire, use or communicate
genetic information, and (b) that the selfsame people have an intact
ability to comprehend the complexities of genetic research or uses of
genetic technologies, and so to give or refuse informed consent to
proposed interventions. Such views are, we believe, untenable.
We conclude that the considerations appealed to in the debates
surrounding the Draft Genetic Privacy Act, and in related debates on
genetic privacy, fail to establish that genetic information is distinc-
tive or provides a basis for distinctive obligations in acquiring and
communicating genetic information. It is, of course, possible that we
have only considered one strand of argument, and that a stronger
case for genetic exceptionalism may come to view. For example,
there may be arguments that establish distinctive obligations that
For example, see Hilary Burton, Addressing Genetics Delivering Health: A Strategy
for Advancing the Dissemination and Application of Genetics Knowledge Throughout
our Health Professionals (Cambridge: Public Health Genetics Unit, 2003), available
at http://www.phgu.org.uk/addressing_genetics.shtml.
Genetic information and genetic exceptionalism 145
bear on particular ways of obtaining or using genetic information.
However, such arguments would not establish a general case for
genetic exceptionalism, because they do not support any general
claim that distinctive obligations come into play because genetic
information is distinctive.
Our discussion of the Draft Genetic Privacy Act and similar
legislative proposals and policy discussions raises problems that
will arise for any version of genetic exceptionalism that  is based
on the premise that genetic information is different from other types
of personal information in ways that require special protection .14
Any version of genetic exceptionalism will fail because of the
heterogeneity of genetic information; the heterogeneity of uses of
genetic information; the inferential fecundity of genetic information;
the lack of a clear-cut genetic/non-genetic distinction; the parity
with non-genetic information; and the practical problem of isolating
or ring-fencing genetic information in medical records. In conse-
quence normative claims that appeal to genetic exceptionalism will be
hard to sustain. In thinking about the ethics of using and communi-
cating information, including genetic information, it is both more
feasible and more fruitful to focus on the ordinary range of informa-
tional obligations. In particular, we need to focus on the various
norms that prohibit epistemic and communicative acts that are [ Pobierz całość w formacie PDF ]