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are carried out.
On the conduit and container model of information and commu-
nication, accountability is often said to require the transparent
disclosure of information that makes it available to others. Our
focus on communicative action and the epistemic standards it must
meet stresses obligations to communicate rather than to disclose.
Systems of accountability can come in many forms and serve a
variety of purposes. As we see it, systems of accountability are
well structured when they protect the legitimate interests and
expectations of various parties and provide evidence for the intelli-
gent placing and refusal of trust. None of these informational
obligations can be discharged without effective communication
between the relevant parties, which meets the necessary epistemic
norms.
198 Rethinking Informed Consent in Bioethics
AFTER RETHI NKI NG: THE POSSI BI LI TY OF CHANGE
Although the details are complex, we believe that the everyday views
that practitioners, patients and research subjects take of informed
consent, and of the reasons why it matters, are closer to the picture
that we have offered than they are to the more fashionable views that
we have criticised. We see informed consent as a way in which
individuals can waive others underlying obligations and expect-
ations in specific ways, when they have reason to do so. Informed
consent works on the assumption that those individuals and institu-
tions have many underlying obligations, including informational
obligations, to others. We cannot understand informed consent,
the standards that it must meet, or the limits to its use, without
taking that background picture seriously. Nor can we understand it
without taking seriously the epistemic norms that must be met by
effective communicative transactions. By contrast, the conduit and
container model of information and communication, conjoined with
the assumption that respect for individual choice or autonomy
provides a justification for informed consent practices which can
distort and mislead, supports numerous untoward implications and
consequences. We believe that our strategy for rethinking informed
consent both avoids these distortions and their untoward implica-
tions and consequences, and provides a useful and coherent way of
thinking about the importance and use of informed consent in
biomedical practice.
We realise that implementing the changes for which we have
argued would require a massive change of direction in biomedical
practice, and in the legislative and regulatory framework in which it
is conducted. Some changes and improvements could be instituted
piecemeal by medical and scientific institutions and professionals.
Others would require action by various parts of government. A few
might need better primary legislation, and in particular more coher-
ent legislation for the protection of individual privacy. Philosophical
work, we know, can take us only part of the way.
However, it can at least take us part of the way, and there are
many things that could be done. In the first place, we could stop
Some conclusions and proposals 199
trying so hard to travel in the wrong direction. Rather than shoulder-
ing the Sisyphean task of subjecting all aspects of biomedical practice
to ever more exacting forms of informed consent, or persisting
with fruitless endeavours to base all of medical and research ethics
on an appeal to individual autonomy, anybody and any body
whose work bears on biomedical practice could seek change. The
NHS and similar healthcare institutions in other countries could
stop trying to implement ever more rigorous and numerous
informed consent requirements, and could remove requirements
that are either dysfunctional or unjustifiable (or both). Research
Councils and other research funders could stop funding work on
improving consent procedures to make them fit for unachievable
purposes, and could stop demanding the use of such procedures
where they cannot or need not be used. Manuals for Research Ethics
Committees could be rewritten to ensure that the point and limits of
informed consent and the standards it must meet are clearly set out,
and to deter inflationary elaborations of these requirements.
Regulators could insist that it is communication to relevant audiences
rather than disclosure and dissemination that matters. They could
judge medical and research performance by the quality of the
communication achieved, and not by compliance with informed
consent protocols whose use cannot be justified. In the UK, medical
and scientific institutions could open an urgent and unaccommodat-
ing dialogue with the Information Commissioner, in the hope of
securing agreement on an interpretation of the Data Protection Act
1998 for biomedical practice that supports justifiable rather than
illusory conceptions of privacy (and similar points apply for other
jurisdictions with similar data protection legislation). Patient support
groups could insist on forms of accountability that support rather
than undermine the intelligent placing and refusal of trust by
patients, and could challenge regulatory demands that impose dys-
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