Dear Editor,

Prof. Fulford endorsed Dr. Thomas Szasz's book THE MEANING OF MIND:

"Within the broad church of anti-psychiatry, Thomas Szasz has been foremost in challenging a narrowly biological conception of human nature. Provocative, thoughtful, and highly readable, The Meaning of Mind extends his arguments to the bleak redunctionism implicit in modern neuroscience. This is a timely stand against what C.S. Lewis called the 'abolition of man.' Thomas Szasz is a true Socratic gadfly of our modern Athens."

I don't know why Prof. Fulford endorsed a book whose premise he does not agree with. Fulford's "plea for mental disorder" makes no sense if he takes Dr. Szasz's contention seriously, that "mind" is only a metaphor. There is no "mental disorder" if there is no "mind".

If Dr. Szasz is wrong then what is the meaning of mind?

Szasz, T.S. 1997, dust jacket

Dear Editor,

We congratulate Malpas on an eloquent paper but disagree with her conclusions: If it is appropriate to tell a child that they are at risk of some illness in adult life, Malpas argues, then it must be appropriate to tell them if they are actually going on to develop it. Such an action may of course be entirely appropriate for conditions which affect children, or where there is some medical intervention in childhood that may affect the later course of the disease, but Malpas does not consider such instances, rather the genetic conditions, such as Huntington’s disease where there is no available medical intervention and onset usually occurs in adult life. Many individuals at risk of HD, when allowed to make informed choices as adults, choose not to know their genetic status, even though they have lived with the knowledge of their own risk for many years. Indeed only a minority of those at risk go on to have predictive genetic testing. This remains the main reason to not test during childhood: Testing during childhood denies those children the informed choice as adults.

Malpas views the distinction between the knowledge someone is at risk (through knowing a disease is present in the family) and knowledge of genetic status, as an arbitrary and illogical cut-off, yet we suggest that this distinction is in place for very good reasons. Whilst it may be unhelpful and deleterious to a child to deny that the obvious clinical features a close relative is exhibiting have any relevance to them, it is not logical to conclude that they might then as well have a genetic test to confirm their own status. Imagine the following analogy: Most children will become aware at some point during their childhood that they are mortal. Some will struggle with this, and spend some time being very anxious about it, but at some point during childhood their risk of dying will be assimilated. Suppose it were possible, through some test, to predict the actual date of death. It does not follow that, just because the child is aware in childhood that the risk of death is there, that it is therefore now also logical to predict its actual date. Furthermore, if such a test were freely available to adults there might be a variable uptake: Some will want it to use this information to plan their lives while others would rather live in ignorance of such knowledge. Such difficult choices should be left until a time that adequate consent can be given.

The decisions that the child will want to make on the strength of the test results may initially appear reasonable but, on closer examination, the claimed benefits of knowledge vanish into the mist. End of life decisions cannot sensibly be made by a healthy young child who has some decades to live … and who is likely to experience good times as well as bad during those years. Decisions about education, career and relationships may be made by a young child but are more likely to blight their healthy years than an uncertain risk of disease at some point in the future. We all live with death ahead of us; those who may harbour a genetic disorder realise that this death rather than another death may await them – but to a child or teenager, their situation may not seem very different from that of their peers. To know that this particular death is what awaits you, however, is very different and could well be disturbing.

Early knowledge of genetic status may be helpful and lead on to important choices – if the test gives a favourable result. To assimilate an unfavourable result while avoiding the perception that this is a threat will be much harder if the child’s unfortunate genetic status is already known. For a child to retain “hope” when his parents are anxious and distressed about a test result will be difficult indeed. The “good” outcomes of bad test results arise in circumstances where the individual has chosen to go through testing as an independent person and in a very different context from that of a child whose parents are clearly anxious about their child’s future and eager to resolve their own uncertainty at the expense of their child’s capacity to make an independent choice in the future.

Malpas does not like secrets within the family. We can all agree that difficult information should be discussed as openly as possible but, if the information causes family members great distress or if the relevant biology is difficult to understand, there will be limits as to what it is helpful to share with a young child. Passing on the knowledge requires that the child is shown how to view it from a helpful perspective. This will be a real challenge for many families who have been devastated by disease. While many families often manage this task well, to give information about hard facts, rather than information about mere risks, might well prove too difficult for many. If an affected parent (or a parent at very high risk), has tested a child in the hope of finding that the child, at least, has been spared, and if this hope has been dashed, then the support that they can provide to help the child may be limited.

A powerful advantage of discussing the family illness with a child but explicitly deferring the moment of testing at least to their reaching adult maturity is that this emphasises both (a) that the decision about testing is serious, and (b) that this decision is for them to make – that they are trusted with this. So the family and professionals – if they agree – are jointly acting to acknowledge the difficult situation of the child and, at the same time, validating the child’s worth as an individual. This can be a very powerful message and potentially therapeutic. To move away from this position does not seem to us to be a move in the right direction.

Angus Clarke and Anneke Lucassen

Dear Editor,

I sympathise strongly with Sokol and Car's sentiments about the use of passwords for telephone transfer of patient information. However, I struggle with the practicalities. In community pharmacy there are daily communications between pharmacists and GPs or hospital consultants, often unknown and remotely located from each other, to clarify prescriptions, suggest alternatives, etc.

In community practice it is not unknown for drug misusers to telephone the pharmacy and purport to be medical practitioners who "authorise" advance or excess supplies when the addict arrives at the pharmacy. In one memorable case for me, a patient's husband telephoned a pharmacy to check that the recorded address for his family was correct, not disclosing that he wished to locate his estranged wife with a view to a spot of domestic violence.

The counsel of perfection is to call such persons back but this is scarcely practical for the hundreds of daily exchanges between health professionals in practice. These proceed mainly on trust supplemented perhaps by occasional voice recognition and familiarity with the jargon. This loophole in the protection of patient cofidentiality should be addressed; I just quail at the prospect of remembering yet more passwords!

I was not impressed by Dr Geggie’s article offering a survey of the attitudes of newly appointed consultants towards research fraud (J. Med. Ethics 2001; 27:344-346). Indeed, by mixing up categories of misconduct from what is at most “bad behaviour” to the very serious, he is not entirely beyond reproach himself. I remind readers that Dr Geggie suggested that 55.7% of the respondents had observed (from the title) “research fraud”.

If the term “research fraud” is to have any meaning, it must be reserved for conduct that consciously and deliberately attempts to impose a fraud on others. The U.S. National Academy of Sciences report “On Being a Scientist: Responsible Conduct in Research” distinguishes clearly between “misallocation of credit, honest errors and errors caused through negligence” and “deception, making up data or results, changing or misreporting data or results, and plagiarism”. The former are “ethical transgressions … that generally remain internal to the scientific community .. dealt with locally through peer review, administrative action and the system of appointments and evaluations”. The latter “strike at the heart of the values on which science is based”. The White House’s Office of Science and Technology Policy reached similar conclusions, restricting research misconduct to “fabrication, falsification and plagarism”. I agree with these assessments.

In Dr Geggie’s paper, deception would include deliberate falsification of data (category 3 of Dr Geggie’s table 1), cheating (4A) and deliberately plagiarising without attribution (4D). We then move into fairyland, because Dr Geggie next asks “have you ever been an author on a paper for which any of the authors have not made a sufficient contribution to warrant credit for the work” or “has your name ever been omitted from a paper for which you had made a substantial contribution”, and, surprise, surprise, over half answered yes. These are examples of, at worst, ethical transgressions (but more often examples of delusions of grandeur on the part of the offended) but are not research fraud.

Those of us who run large research groups know from experience that authorship of any paper poses problems. I have never met anyone, from the cleaner to the director, who undervalued his/her own contribution to the work! The issue arises with such consistency that many labs (including my own) have long documents on how to resolve the problem of who goes on, and who stays off, the authors’ list. But research fraud? Give me a break!

Of those who responded, approximately 10% had personal knowledge of research fraud, and 5% at most (it is not possible to tell if there is overlap between those answering different questions) admitted to acts that could be regarded as research fraud. This corresponds to my own experience. I have spent more than 40 years in human molecular genetics, a very competitive field, of which 25 years has been spent running very large groups. I know the work of over 1000 scientists well. I have personal knowledge of one case of serious research fraud and perhaps three or four cases where the reporting of data was so careless as to verge on misconduct (though without intent to commit fraud). I also know of one case of plagiarism. To blur the boundaries between “research fraud”, “research misconduct”, “possible future misconduct”, and complaining about not getting your name on a paper does no one any good, and certainly does not help any rational discussion about research ethics.

Bob Williamson, MCRI