Editorials
Soft paternalism and the ethics of shared electronic patient records
It’s ethically sound for patients to opt out
The NHS is planning to make patients’ health records
more easily accessible using a network of integrated
databases.1 This will, we may reasonably expect, improve
quality of care and efficiency, reduce paperwork, and sometimes
even save lives. The ultimate aim is to benefit patient health and
welfare.2
Easier access to medical data from a “single resource shared
by everyone” also makes patients vulnerable. Patient records
contain sensitive private information that can, if not handled
correctly, harm the patient. Should all citizens by default be
included in the new electronic records service with the possibility
to “opt out” if they prefer, or should people be asked to “opt
in” only if they want to? The Royal College of General
Practitioners strongly recommends “opt in” with reference to the
ethical principle of informed, explicit consent, whereas Connecting
for Health, the agency building the new electronic records
service, recommends “opt out.”3
To impose electronic records on members of the population
against their will may be unduly paternalistic even if we assume
that all the technical, legal, and organisational safeguards are in
place and that the system, on balance, promotes health and welfare.
A policy counts as paternalistic if it “attempts to influence
the choices of affected parties in a way that will make choosers
better off.”4 Should we not all accept a policy that makes
everyone better off? Defenders of liberty and autonomy disagree.
One of the lessons learnt from the history of medical ethics is
that efforts to promote the common good must be constrained
by liberty and informed consent: those affected have the right to
accept or reject a programme which will have a direct impact on
their legitimate interests. Patients have a legitimate interest in
privacy and preventing third parties gaining access to sensitive
material—this is a concern in legislation everywhere.5–8
Standard medical ethics suggests that when people disagree
about whether a programme is acceptable, the public should be
fully informed about its implications and included only if they
give explicit consent.9 Those affected know best whether it is
good for them. For shared, electronic patient records “opt in”
with explicit informed consent is therefore the only acceptable
solution.
Or so the argument goes. Recent advances in ethics, law, and
behavioural economics on the understanding of “bounded
rationality” suggest an alternative way of protecting freedom: soft
paternalism.10 Consider an example. Suppose the director of the
cafeteria in your hospital knows that customers, including
doctors and nurses, have a tendency to choose more of the foods
placed at the beginning of the counter. If the director offers the
healthy food first, she maximises the chance of customers making
healthy choices. If she places the less healthy food first, the
opposite will happen.4 What is the right thing to do?
People do not always make the choices that are best for them.
Employees offered a wide range of pension saving plans (including
plans that are good for them in the long run) on average
make poorer choices than employees who are offered a good
plan as a default but who are free to opt out.11
The choice of the default rule in organisational systems powerfully
affects people’s choice for two reasons. Firstly, people are
not always rational.12 Inertia prevents people from making the
best choices, collecting all the information is costly and takes
time, weakness of will affects all of us, and people do not always
have stable and well formed preferences within the range of
choices open to them. Secondly, as the cafeteria example shows
there is, in many cases, no neutral freedom of choice. Soft paternalism
recommends mildly steering choices in a direction that
makes people better off, while preserving freedom of choice.
The same kind of reasoning can form the basis of the
suggested NHS information technology programme, using “opt
out.” People are free to protect their interests if they strongly
disagree with the policy. Logistically this also makes sense. The
transactional costs of an “opt in” policy will be formidable. If too
few patients are included, the potential benefits of the
programme will be lost.
The essence of the ethical dilemma is that explicit informed
consent preserves freedom of choice at the cost of less health
and welfare while strong paternalism, without the possibility to
opt out, promotes health and welfare at the cost of freedom. Soft
paternalism—in this case accepting the default policy—preserves
freedom of choice and promotes health and welfare for all.
I have three caveats to this conclusion, however. The NHS
must convincingly show that technical, organisational, and legal
safeguards will be implemented in its information technology
programme. These safeguards must include strict and transparent
rules of access to health records, mechanisms of complaint,
and open understandable information about the programme
and its implications.
Competing interests: None declared.
1 Cross M. Keeping the NHS electronic spine on track. BMJ 2006;332:656-8.
2 Department of Health. Making a difference: safe and secure data sharing between health and
adult social care staff. London: Department of Health, 2006.
3 Cross M. GPs’ leader sets conditions for electronic care records. BMJ 2006;332:627,
doi:10.1136/bmj.332.7542.627-b.
4 Sunstein CR, Thaler RH. Libertarian paternalism is not an oxymoron. University of Chicago
Law Review 2003;70:1159-202.
5 Beardwood JP, Kerr JA. Coming soon to a health sector near you: an advance look at
the new Ontario Personal Health Information Protection Act (PHIPA). Healthc Q
2004;7(4):62-7.
6 Adalsteinsson R. Human genetic databases and liberty. Jurid Rev 2004;2004: 65-74.
7 Conti A. The recent Italian Consolidation Act on privacy: new measures for data protection.
Med Law 2006;25:127-38.
8 Choi YB, Capitan KE, Krause JS, Streeper MM. Challenges associated with privacy in
health care industry: implementation of HIPAA and the security rules. J Med Syst
2006;30:57-64.
9 Beauchamp TL, Childress JF. Principles of biomedical ethics. 2nd ed. Oxford: Oxford University
Press, 1983.
10 Davis JK. The concept of precedent autonomy. Bioethics 2002;16:114-33.
11 Thaler RH, Benartzi S. Save more tomorrow: using behavioral economics to increase
employee saving. Journal of Political Economy 2004;112:164-87.
12 Elster J. Sour grapes: studies in the subversion of rationality. Cambridge: Cambridge
University Press, 1983.
doi 10.1136/bmj.38890.391632.68
Division for Medical Ethics and Philosophy of Science, Department of Public
Health and Primary Care, University of Bergen, Kalfarveien 31, N-5018 Bergen
Ole Frithjof Norheim professor (
ole.norheim@isf.uib.no)
BMJ
BMJ Online First bmj.com page 1 of 1
Cite this article as: BMJ, doi:10.1136/bmj.38890.391632.68 (published 23 June 2006)
Copyright 2006 BMJ Publishing Group Ltd