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not needed to permit invasive actions, since none are proposed. Nor
is it needed to waive rights to informational privacy of the sort
that are adequately secured by reversible anonymisation. It is needed
only if we assume a very strong conception of informational
privacy that views the very possibility of intrusive action as violating
privacy. This suggests that even if we reject a general return to
paternalism, medical research without informed consent would
be justifiable where the research is non-invasive and information
and tissues are lawfully held and reversibly anonymised. In
effect, retrospective studies, such as secondary data analyses and
epidemiological studies, would not require consent: this research
4
This was a central issue in debates surrounding the passage of the UK Human Tissue
Act 2004. See Kathleen Liddell and Alison Hall, Beyond Bristol and Alder Hey:
The Futu re Reg ulation of Human Tissu e , Medic al Law Revie w 15 ( 2005), 170 223 .
158 Rethinking Informed Consent in Bioethics
does nothing further to the former patient or former research subject
who was the source of information or tissue. Accepting these points
would not, however, establish any general case for paternalism in
biomedical research.
However, these considerations are not relevant to the case of
patients who cannot consent to clinical interventions, or of research
subjects who cannot consent to participate in prospective research.
Here proceeding without informed consent would manifest a degree
of trust in clinicians or researchers. Although rejecting paternalism
where it is avoidable does not show whether or not trust should
always be refused, a reliance upon trust is often seen as unacceptable.
Trust is often seen as one more form of deference, and the rejection
of trust as one more aspect of rejecting avoidable paternalism. A
suspicion of trust is central to contemporary autonomy-based bio-
ethics, and typically reflects fears that trust can be misplaced, and
that the cost of trusting the untrustworthy can be high.
Since there is no guarantee that medical and research practice will
always be trustworthy, it may seem prudent to refuse all trust, and to
concentrate simply on ensuring that clinicians and researchers are
(more) trustworthy. This is usually done by introducing more robust
and reliable ways of holding clinicians and researchers, and the
institutions within which they work, to account. Accountability is
then seen as the successor to trust. Robust forms of accountability are
widely seen as making trust obsolete. In this chapter we shall query
many aspects of these standard views. We shall suggest that trust is
not dispensable, and that it cannot be replaced by systems of
accountability that support trustworthiness without requiring any
form of trust. As we see matters, some forms of trust are not
dispensable, need not be deferential, can be intelligently placed (or
refused), and can be epistemically and ethically justified.
Decisions to place or refuse trust are typically individual decisions
just as giving or refusing informed consent is an individual decision.
However, the epistemic and other norms that must be met for
intelligent placing and refusal of trust are less demanding than
those that must be met in giving and refusing informed consent.
Requiring patients and research subjects to give or refuse informed
Trust, accountability and transparency 159
consent is, we have seen, all too often a demand too far. Relations of
trust may sometimes offer a more realistic basis for medical and
research practice if but only if reasonable evidence to support the
placing or refusal of trust is available. If medical and research
practice can be anchored in trustworthy structures and practices,
which offer others reasonable evidence of their trustworthiness, they
may earn others trust, while untrustworthy structures and practices
may fail to do so. Where biomedical institutions and practices are
trustworthy, and where patients and research subjects judge that they
are trustworthy, there is no need to place trust blindly. On the
contrary, trust can be intelligently placed and intelligently refused.
PLACI NG AND REFUSI NG TRUST I NTELLI GENTLY
We are well aware that these suggestions will be greeted with great
scepticism. It is a commonplace of contemporary debate to claim
that trust is intrinsically immature, risky and unintelligent, and to
recommend that we concentrate on ensuring that others are trust-
worthy. Trustworthiness, it is held, can be improved by establishing
robust and transparent systems of accountability in all areas of life.
If we can ensure trustworthiness, trust supposedly will no longer
matter. In effect, accountability can supersede trust. We believe that
this picture seems plausible only if we rely on a limited, indeed
unintelligent, conception of trust, and overlook convincing reasons
for thinking that placing and refusing trust are ineliminable in
human life.
Trust matters, in biomedicine as elsewhere, because individuals
have limited epistemic and practical capacities. Each of us has a wide
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