of
The Catholic Union of Great Britain
and
The Guild of Catholic Doctors
Reply to Nuffield Council on Bioethics
on
'Mental disorders and genetics: the ethical context'.
Paragraph numbers refer to those of original consultation document
Thank you for allowing us to comment on your document.
3. We hope and expect that research into the relationship between genetic make up and the functioning of the mind will throw light on how the mind works in health and disease.
Since most common conditions in psychiatry are likely (or known) to be multifactorial, the ascription of character traits to alleged or suspected genetic causes, with the implication that they are fixed or 'pre-destined' by the genes, would not only be quite unjustified by the evidence but runs the risk of appearing to undermine the uniquely human capacity of autonomy or free will and, in consequence, personal responsibility. We agree with 3.6 last sentence.
4. Improvements in our understanding of disease are to be welcomed, particularly if they lead to improvement in treatment (4.3). Predictive testing/diagnosis, however, is fraught with problems. As discussed in your section 3 it may be seen, in the popular mind, as giving clear cut prognoses whereas, in reality, these would not be soundly based in the evidence. If this, in turn, leads to abortion, rather than to a search for remedies and cures, it is greatly to be abhorred. We fear that pressures for pre-natal screening, and a rejection of the handicapped (physically or mentally) by society as a whole (because they could have been 'avoided') are likely to increase.
5. Genetic Screening. We consider that informed consent is a sine qua non of any screening, and especially of any research, because the possible ramifications in society may be widespread.
5.2 Non-therapeutic research (in which any benefits are non existent or remote), unless anonymised or of a purely observational nature, should not be permitted on those below the statutory age of consent, or those who have never had capacity In those who have had capacity, where the research cannot be effectively achieved without the participation of persons who are or may be without capacity to consent (but who at the same time do not show, nor are known to have shown, any present or prior objection), carries negligible risk, is desirable in order to provide knowledge of the causes or treatment of, or of the care of persons affected by, mental disability, and is into a condition from which the subject suffers (and not merely 'may suffer'), we consider that the consent of the nearest relative, after full explanation, may be considered valid. We do not consider it sufficient justification for such research that it is merely 'not against the best interests' of the subject.
Therapeutic research may be undertaken provided there is a reasonable prospect or likelihood of benefit to the subject (ie. is in their best interests).
(b) The level of competence for consent to non-therapeutic research and research into conditions with wider implications for the relatives should be set at the highest level, and that for therapeutic research in the subject's best interests at a lower one. Genuine 'consent' to programs which are psychosocially intrusive would require an understanding by the patient of these implications.
5.3 If research is to be carried out with proper prior counselling and due consent there would seem to be no reason why the participants should not be informed of the results. We would not consider it ethical to do research if it were done in such a way that the participants could not, ordinarily, expect to be informed. There is, however, a 'right not to know', which must be respected.
It would seem to us that information arising from genetic research belongs to the subject and should only be made available to others with the subject's consent. This would apply to health officials or social services - unless in a fully anonymised form. Where a patient has been referred by his GP or indeed in any case, subject to the patient's consent, we would expect the information to be given to the GP.
With regard to the handling of the information that arises indirectly from the study, it would be difficult/impossible to lay down hard and fast guidelines - it would be necessary to consider each case on its merits, taking into acount any serious reason for overriding the usual presumption that such very personal information is confidential to the subject.
5.5 We do not believe it is appropriate to offer genetic testing, except within the limits of a specific research project or for the genetic counselling of a couple at risk of transmitting a serious disease, unless some therapeutic intervention which will benefit the patient is to follow. In particular we would oppose 'over the counter' testing or the sale of kits for such a purpose.
5.6 The increase in anxiety associated with screening (even if the results turn out negative) is well recognised. It seems very likely that the detection of a possibly abnormal gene, even in a polygenic condition, will heighten uncertainty and anxiety. This could well apply to otherwise unaffected members of a family.
5.7 Genetic counselling for those with mental disorders will indeed be more difficult that for those who have no such disorder. Nevertheless it must be undertaken before screening and counsellors will have to be trained to do it. In spite of its alleged 'non-directiveness' counselling is rarely entirely non-directional in practice and this may be even less achievable with the mentally disordered. Nevertheless a counsellor must not seek to persuade, still less coerce, a patient to undergo research which is of no benefit to themselves.
5.8 Provided that 'clearer diagnostic classification' was for therapeutic purposes for the benefit of the individual, for example so that medication could be better tailored to needs, it would seem permissible and laudable to pursue it.
5.9 Genetic information may guide some of those at risk to avoid harmful environmental influences. We do not consider that there is any specific mental health risk which would justify an employer demanding a genetic screening. In particular we do not consider that employers have a right to know a would-be employee's genetic endowment which might predispose him/her to mental illness, whether it be to 'protect' the pension fund or for any other reason.
5.10 As 5.6
5.11 However pressing the circumstances we are opposed to the termination of pregnancy.
5.12 We believe that there might well be pressure for genetic screening before adoption, and in this situation we believe the adopting parents would be entitled to know the results - even though this might have an adverse effect on their willingness to adopt.
5.13 It is hard to foretell whether knowing of a genetic basis will increase or decrease the stigma of mental disease. We fear it may increase at first but hope that, provided such knowledge leads to better prospects of treatment, it should eventually decrease.
5.14 Society may well tend to shun the mentally handicapped and their parents, as is already the case for the physically handicapped. This is a form of discrimination which must be opposed. We would consider repugnant in the extreme, and would strongly resist, any suggestion that children might be able to sue their parents for 'wrongful birth' on any grounds. We consider that such a possibility should be prevented by the passing of appropriate legislation.
5.15 Attempts to excuse behaviour on a genetic basis have, as stated, already been made, but we consider that only a clinical diagnosis, made after proper assessment, should be allowed to have any weight in such matters. Genetic information could, nevertheless, be of use to doctors in making a clinical assessment. It is important that the public should not be duped over the existence, importance or relevance of genetic testing.
5.16 If civil liability is based on a cause and effect relationship it does not seem unreasonable to seek for a genetic cause: always provided, of course, that a mutation, induced by external causes (eg those in a particular work environment), might have been the reason for the genetic 'cause' (ie. defect) in the first place.
5.17 Any liability on the part of health care workers should arise only on the basis of proven negligence. The patient (or parents) must retain 'responsibility' for their own genetic make-up, and any decision made on advice given should be on this understanding. (see also 5.14)
5.18 We are concerned lest a mentally incompetent adult might allow potentially incriminating evidence to be taken from them without fully understanding the consequences. Their rights must be properly upheld by law and existing codes must be followed, though even under these (eg. Code C: 1.7 (iii)), it appears that protection for the individual is limited. In the case of serious crime, however, the interests of the state in protecting its citizens as a whole can override the rights of the suspect to confidentiality or to refusal of consent to material being taken.
5.19 It seems generally to be considered that, at least as far as life insurance is concerned, the ordinary actuarial calculations are perfectly adequate and will continue to be used without the need for further evidence. With respect to longevity (long stay care cover) or likelihood of illness (medical cover) it will clearly distort the actuarial bases if those who know they have genetic disorders (potential or actual) can apply for insurance at ordinary rates while those without such disorders feel no need to insure themselves at all. Since insurance ordinarily depends on the spread of probabilities in a mixed group of people ('mutuality') it seems only reasonable for insurers to start from the same information base as their clients. In cases where genetic studies have previously been undertaken and the results are known to the proposer it would effectively defraud the other customers of the company if this information could be withheld by the proposer when the 'risk' is being assessed by the actuary.
However, if it should become necessary or compulsory for a whole population to insure for health care such provision would have to be 'solidarity' based (ie based on need alone) and genetic factors would have to be ignored in setting premiums.
5.20 (And see above 5.9) It is hard to see how any any adjustment could be made to working conditions on the basis of genetic information, as opposed to contemporaneous clinical information about the actual physical and mental state of the individual. Less benign uses are possible and we do not feel that an employer should have any right or entitlement to such information.
5.21 Genetic information will result in an increased ability to categorise individuals. Whether or not it benefits them or causes discrimination will depend on the attitude society takes to the findings. Certain conditions could certainly require special education provision, and genetic information could be of help in organising or providing appropriate teaching. However, the possibility of genetic defect being used to decrease the level of provision of health care for some people must be strongly opposed.
15th May 1997
Signed by:-
Chairman, Joint Ethico Medical Committee.
Addendum:
In September 1998 the Nuffield Council on Bioethics published its report 'Mental Disorders and Genetics: The Ethical Context' following the consultation to which the above response was made.
Although this was not a document requiring a response, it was felt appropriate to write a letter critical of a few points made in the report.
http://www.nuffield.org./bioethics/publications/mentaldisorders.html