This report examines the ethical issues that may arise in the course of genetic research into mental disorders and in the application of that research in clinical and other settings. Some of these issues arise because the conditions are genetic, and others because they relate to mental disorders.
A broad and humanistic perspective may be considered to have two basic ethical requirements: respect for human beings and human dignity, and the limitation of harm to, and suffering of, all human beings.
The Working Party considered both rare single gene disorders, focusing on the examples of Huntington’s disease and early onset Alzheimer’s disease, and common mental disorders, such as schizophrenia and the more common late onset form of Alzheimer’s disease, influenced by susceptibility genes and by environmental factors. The ethical issues associated with mental disorders concern the implications for reproductive decisions, the stigma associated with mental disorders and the fact that some disorders may impair the capacity to make decisions.
The Working Party concluded that genetic tests will not be particularly useful in the near future in diagnosing mental disorders with more complex causes, for prenatal diagnosis or for population screening. It is more probable that identifying genes involved in susceptibility to common mental disorders will lead to the development of more effective drug treatments.
Even if a number of susceptibility genes were identified for a particular disorder, the Report concluded that, without an understanding of their interaction, they would not be adequate for predicting individual risk in a clinical setting.
The Working Party recommended that genetic testing for susceptibility genes which offer relatively low predictive or diagnostic certainty be discouraged, unless there is a clear medical benefit to the patient. The genetic testing of children requires special safeguards and the Working Party recommended that predictive genetic testing and testing for carrier status for mental or indeed other disorders in children be strongly discouraged. The report also drew attention to the fact that genetic testing for mental and other disorders in adoption raises important and complex issues which require appropriate guidance.
While the best safeguard against new eugenic pressures is freely given, properly informed consent, guidelines for the establishment and maintenance of genetic registers are needed. The report recommended that the confidential nature of genetic information be maintained but recognised that, exceptionally, disclosure might be justified. Recommendations were also made about the use of genetic information in insurance and employment.
For most people with a mental disorder, arrangements about consent to research participation should not be any different from those required by others. However, for those who were only intermittently competent, consent should be sought only when they were competent. For the incompetent, participation in non-therapeutic research is considered to be ethical, subject to strict safeguards.