JOINT ETHICO-MEDICAL COMMITTEE
of
THE CATHOLIC UNION OF GREAT BRITAIN
and the
Guild of Catholic Doctors
Reply to the Medical Research Councilon
'Genes and the mind'
Thank you for asking us to comment on your document. We have previously submitted our views to the Nuffield Council on Bioethics, in response to their document 'Mental Disorders and Genetics: the Ethical Context'. Our full text is available if required.
What are they researching?
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. Improvements in our understanding of disease are to be welcomed, particularly if they lead to improvement in treatment.
Predictive testing/diagnosis, however, is fraught with problems. As you point out the mind is not all in the genes. Such testing may be seen, in the popular mind, as giving clear cut prognoses which, in reality, would not be soundly based in the evidence.
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 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. If this, in turn, leads to abortion, rather than to a search for remedies and cures, it is greatly to be abhorred.
With regard to genetic screening we consider that informed consent is a sine qua non for any screening, as well as for any research, because the possible ramifications in society may be widespread. To seek clearer diagnostic classification for therapeutic purposes in order to benefit the individual, for example so that medication could be better tailored to needs, would seem commendable. At the same time 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, and this could well apply to otherwise unaffected members of a family.
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.
How might discrimination happen?
Genetic information might guide some of those at risk to avoid harmful environmental influences. However, it is hard to see how any any adjustment could be made to working conditions on the basis purely of genetic information, as opposed to contemporaneous clinical information about the actual physical and mental state of the individual. 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, some of which might be less benign.
As far as life insurance is concerned, it seems generally to be considered that the ordinary actuarial calculations are perfectly adequate and will continue to be used by most companies without the need for further evidence. We can therefore see no need for a company to demand genetic testing, no matter what the proposed sum to be assured.
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. This is not discrimination, it is the proper basis for insurance, and if it were to be prevented it would discriminate against the company's other clients.
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.
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.
Unfortunately, society may 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 legislation should be in place to prevent this.
However pressing the circumstances we are opposed to the termination of pregnancy.
The Testing Question
Society should have no need to fear or to cut itself off from the truth. The important problem to be addressed is that of the methods which may be used and the extent to which 'blue sky' research (ie. research at random in the hope something useful turns up) can be undertaken. We strongly support your statement that 'Measures to avoid unacceptable uses of research and to allay fears will be needed.'
We have already noted that informed consent is essential for any research. If volunteers are to be used for research it is important that their interests should be protected by proper supervision of and accountability by the researchers.
In the case of incompetent persons, therapeutic research may be undertaken, with consent from such persons as may be able to give it on their behalf, provided there is a reasonable prospect or likelihood of benefit to the subject (ie. is in their best interests).
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 previously 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.
22nd May 1997
Signed by:
Chairman, Joint Ethico Medical Committee.