Confidentiality and the citizen
The current climate is perhaps not one most conducive to a sensible
discussion on the balance between the rights of the citizen and the rights
and duties of the state. The potential threat of terrorist outrage casts a
malevolent light over any consideration of individual liberties that have
for so long been taken as fundamental to a civilised way of life. That light
falls not only on matters affecting individual behaviour, such as the
possible use of identity cards, but also on less immediately obvious issues
such as the confidentiality of personal data. It does so, furthermore, at a
time when national systems bearing medical information are becoming an
operational reality, and not just a future possibility that might merit some
ethical consideration.
There can be little doubt that current circumstances quite properly
require a response: the vital question, which has both practical and ethical
dimensions, has to be how far that response should go. Indeed, the question
is one of such importance that for this issue of the Journal we have chosen
a single major essay on the topic.
Professor Eike-Henner Kluge, of the Department of Philosophy at the
University of Victoria, analyses the challenges both to healthcare
professionals of all types, and to society as a whole, presented by the huge
potential of ehealth. That potential however is accompanied by increased
undermining of the ethical base that has in the past sustained the
confidentiality of medical records. Healthcare informaticians have always
recognised that need, but the technical advances that make the electronic
healthcare record a reality make the need even more pressing — and at the
same time more open to challenge and abuse.
Professor Kluge describes the considerable body of work that has already
been undertaken to tackle the problem. In one sense however, those
approaches are technical. It is in the field of ethics that danger lurks. In
the current climate, there is an apparent subordination of international
ethical standards to individual state interests. There are no international
agreements on professional standards for healthcare informaticians. Above
all, there is no global agreement on the precise status of healthcare
records.
It is against that background that the USA Patriot Act must be seen, with
its relevance not only to an English, but also to a worldwide, audience.
That Act allows the Federal Bureau of Investigation and the National
Security Agency — after obtaining appropriate permission — to have access to
the records and the source codes of the communications of any American
company anywhere in the world and to those of any of its foreign
subsidiaries. The Act also makes it illegal to inform others that such a
search has taken place. In an era when a sizeable proportion of contractors
and subcontractors to NHS Connecting for Health have American affiliations,
this cannot but cause concern to those responsible for the confidentiality
of the emerging English national patient record. In essence, the Patriot Act
would enable the US security services access to a high proportion, if not
all, of British computerised healthcare records.
At a time when the Government is pressing on with creating a National
Identity Register, to be based in the first instance on the national
insurance number, there is quite naturally increased concern about access to
such data. That concern will grow as more and more national information
systems emerge, and are linked, increasing the number of access points, and
the associated difficulty of policing them. As Professor Kluge points out,
the risks will come not only from our own country, but also globally, either
illegally, or in pursuit of aims that another nation regards as legitimate.
One must hope that the British Government will take a resolute stand against
inappropriate access of this sort — but the supine approach in the recent
case of the ‘NatWest Three’ does not immediately inspire confidence that it
will.
The dilemma which Professor Kluge presents is, in one sense, age-old.
There has always been, will always be, a tension between the rights — and
duties — of the citizen, and those of the state. The technology of today,
however, makes that tension much more sharply defined. A debate on the
safety of the medical record, in the current political and technological
climate, has merged into a wider debate about the safety of the individual.
It is plainly the duty of the State to take appropriate steps to protect
its citizens; and it is equally the duty of the citizen to co-operate in
those measures upon which might depend not only his/her own safety, but also
that of others. The dilemma, which faces and has always faced government, is
how to strike a correct balance between liberty and security.
I began by saying that the time is not conducive to a sensible discussion
on the issue. Events, however, drive on, and we do not have the luxury of
time. We can only hope that those events do not weigh too heavily against
liberty.
Michael Fairey |
