Evidence submitted by Dr Maurice Rosen
(EPR 12)
EXECUTIVE SUMMARY
The evidence submitted is purely concerned with
whether patients may prevent their personal data being placed
on systems. It is suggested that an individual should have the
right of refusal based on the strong moral arguments that can
be put forward based on personal autonomy, non maleficence, beneficence
and fairness. To do otherwise will be treating the individual
as a means to someone else's end, when everyone is entitled to
be treated as an end in their own right.
MEMORANDUM
1. My concern is purely whether patients
(in other words any of us, for at some time or another all of
us have registered with a general practitioner, whatever medical
care we have subsequently received), may prevent their personal
medical data being placed on the new local and national electronic
record system.
2. It is my intention to argue over the
next few pages the case for any individual to be able to have
the right not to allow his/her medical details to be recorded
on this new system without their permission.
3. If we are to value and respect every
individual as an individual in their own right we have to treat
them as ends and not as a means towards someone else's satisfaction.
Every individual will have different criteria and means of deciding
what it is that is important for them. As a consequence of these
individual values each person will decide on what actions they
wish to take in relation to any decision they have to make which
will have an influence on their life. This is what is simply known
as personal autonomy. As long as the action/ decision involved
in personal autonomy does not as a consequence harm anyone then
to interfere in that individual's decision would be a breach of
their autonomy and hence immoral. We do not yet as a society force
people with medical conditions which require treatment, to receive
such treatment against their wishes if they are considered to
be in complete control of their mental faculties. We accept their
right to make decisions for themselves. To do otherwise would
involve us being on a slippery slope leading back towards any
number of inequalities, hence discrimination and stigmatisation
of certain groups. I thought, as hard as it might be, we were
as a society, trying to move away from that situation and attempting
to build a society that was more tolerant of people's differences
and hence respected them as individuals, as their own ends. If
not, why then, all the fuss about the removal of organs from dead
children's bodies at Alder Hey hospital without consent of the
parents.
4. If you do not feel the argument of personal
autonomy goes far enough lets explore the argument of non-maleficence.
Namely, one should not cause harm to another person than, as can
be argued, to protect oneself from harm being caused to oneself
by another, the well known argument for self defence.
5. However, I hardly feel that an individual
not allowing their personal medical details to be on a national
computer could be construed as an assailant, and thus likely to
cause harm to others by not being involved in some research project.
After all, any medical research project has to go before an ethical
committee before it can be allowed and subsequently, every individual
patient or member of the public to be involved in the project
has to give his or her permission. With what is being suggested
under this new electronic patient record, it would no longer take
into account an individual's feeling about being involved in a
research project no matter how invasive or not it might be. Quite
apart from this completely undermining personal autonomy, it needs
to be remembered that harm is not always physical but can be psychological
as well. It will no doubt be argued that the majority if not all
of the research using a person's personal/medical details will
be of an epidemiological nature, and no personal details will
emerge. Further, if research of an invasive nature is to be carried
out, an individual's permission would still be needed. This however,
would lead to inconsistency and what matters in ethics is consistency
and clarity. Even allowing for the fact that none of the different
moral theories have been able to demonstrate consistency and clarity
at all times, does not mean we should adopt a system which perpetuates
inconsistency.
6. No doubt there will be those who wish
to argue the case against a right to opt out as being counter
to beneficience—do good unto others. For to opt out, especially
if too many people opted out, would undermine the benefits the
increased numbers involved in any research project would bring.
However, we already know statistically the lower limit of the
number of persons needing to be involved in a piece of research
if it is to have any reliability or validity. What matters is
that the research can be repeated independently and be tested
as to its accuracy. It is hardly likely that everyone in the population
is likely to say "no" to being registered. Even if every
member of the population did say "no" to being registered
it is hardly likely to undermine medical research as the vast
majority of people when asked if they are prepared to participate
are more than willing to say "yes", thus demonstrating
personal beneficience, which is the level it should be at—not
assumed for one by the state. It is often forgotten that morality
is a personal decision, not a state decision. A further problem
on relying on a persons' details which have been entered onto
the computer without checking with them first raises the question
as to the accuracy of the information entered onto the computer.
If you cannot be certain as to the accuracy of the information
entered onto the computer it rather undermines the reliability
and validity of the research project, quite apart from misrepresenting
the individual and possibly causing them harm as a consequence.
7. Finally, under the heading of justice
as understood morally (do) as opposed to legally (do not), I accept
there are many headings here which could be considered. However,
I will concern myself with that of fairness. Fairness can only
come about if an individual's views are not only taken into account
but are further respected, which brings us full circle to personal
autonomy. We need to be on guard against any government that takes
upon itself any decision that ignores the rights of the individual
when the individual causes no harm to others. This is what Tallyrand
referred to as "the danger of the majority which needs to
be guarded against".
Dr Maurice Rosen
March 2007
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