Select Committee on Health Written Evidence

Evidence submitted by Dr Maurice Rosen (EPR 12)


  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.


  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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