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We have argued that the point and purpose of informed consent is
obscured unless it is set in the context of an agency-based model of
informing and communicating. This model supports a steady focus
on a wide range of obligations, including, in particular, the everyday
informational obligations that bear on epistemic and communicative
action and transactions. By considering a wide range of the informa-
tional obligations that are generally important in biomedical practice,
we can gain a better and more focused understanding of the impor-
tance of informed consent, and so of the standards that it must meet.
A focus on informational obligations is particularly important
where biomedical practice deals with apparently distinctive types
of information.1 In Chapter 5 we considered the role of these more
1
We say appears to deal with distinctive types of information because, as we argued
in Chapter 5, the very idea that information can be neatly partitioned into
130
Genetic information and genetic exceptionalism 131
specific informational obligations in supporting an account of infor-
mational privacy, and suggested that the topic might be better
approached by rethinking and extending conceptions of confiden-
tiality than by current approaches to data protection. In this chapter
we will look at another aspect of medical and research practice in
which informational claims are said to be of particular, indeed
distinctive, importance.
Since their inception, discussions of human genetics, including
genetic research, clinical genetics and uses of genetic technologies,
have been dominated by a range of informational metaphors and
claims. Some writers have concluded that genetic information is
exceptional, and that there are reasons for thinking that the informa-
tional obligations that bear on it must also be exceptional. In this
chapter we examine these claims, and consider how the account of
informed consent that we have developed bears on genetic research,
on clinical genetics and on the use of genetic technologies.
QUESTI ONS ABOUT GENETI C I NFORMATI ON
The past half-century has seen massive developments in scientific
and medical knowledge, and in the technologies that allow such
knowledge to be organised and applied. This is especially true of
genetics and genetic technologies. Developments in scientific knowl-
edge and technology make it possible to acquire and organise genetic
knowledge of many kinds, in many contexts. Often the acquisition of
genetic knowledge raises few, if any, ethical questions: a student who
learns something general about the molecular structure of DNA
acquires genetic knowledge; a person who reads Mendel s notebooks
acquires genetic knowledge; a researcher who identifies a particular
molecular mechanism by which gene activity is regulated acquires
genetic knowledge. Such knowledge, we may think, is neither
personal nor sensitive.
types personal, medical, genetic etc. is itself problematic, and not as harmless an
assumption as it might seem.
132 Rethinking Informed Consent in Bioethics
But where genetic knowledge is about, or can be linked to,
particular, identifiable individuals, acquiring and using it are thought
to raise serious ethical and regulatory issues. For example, certain
procedures performed upon an individual subject s DNA, or upon
certain DNA products, may show something about that individual s
origins; family relationships; future health; paternity; presence at
a crime scene; gender; traits (such as eye colour); or the health
(or otherwise) of future offspring, and so on. Various interventions
and in particular genetic tests can clearly reveal significant
information about identifiable individuals. Genetic knowledge, or
information, about identifiable individuals is therefore often seen
as personal information, indeed peculiarly sensitive personal
information.
Unsurprisingly, then, many of the ethical and regulatory issues
raised by uses of genetic knowledge are the same as those raised by
the acquisition, use and communication of other personal informa-
tion. For example, those who acquire knowledge from genetic tests
in a clinical context will typically be bound by relations of confi-
dentiality to refrain from communicating the results of such tests to
other parties, unless the individual who was tested consents to a
communicative act that would otherwise breach confidentiality.
But some people have argued, and many more seem to think, that
genetic knowledge derived from tests of an identifiable individual s
DNA often simply referred to as genetic information is intrinsi-
cally distinct from other kinds of knowledge about individuals. This
view is often called genetic exceptionalism (and sometimes gene-
tics exceptionalism ).2 Genetic exceptionalism is typically cast in
terms of distinctive rights and obligations that hold for uses of
genetic information.
In Chapter 3 we argued that normative debates about knowledge
and communication are often distorted by relying on a range of
2
G. J. Annas, L. H. Glantz and P. A. Roche, Drafting the Genetic Privacy Act:
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