Thank you once again for allowing the Nuffield Council on Bioethics the opportunity to submit evidence to the Select Committee on Science and Technology on the subject of genetic databases. I should also like to submit a copy of the Council's report "Mental disorders and genetics: the ethical context" to the Committee's inquiry. [Not printed.] Chapter seven of this report deals with some of the broader ethical and legal issues raised by research on patients with mental disorders.

Genetic Registers

  In its report on Genetic screening: the ethical issues the Council drew attention to the ethical issues raised by the use of genetic registers. It emphasised the need for consent and confidentiality for patients whose data were on such registers. In that report, paragraphs 5.34 to 5.38 set out the general ethical issues raised by the use of genetic registers. Paragraph 10.11 recommended that the Department of Health, in consultation with others, should issue the necessary guidance. In the same report, the Council recommended that the Department of Employment keep under review the potential use of genetic screening by employers.

Use of genetic information from individuals with mental disorders

  In its report "Mental disorders and genetics: the ethical context", the Council drew attention to the particular vulnerability of patients with mental disorders in the context of the use of genetic information. Mental disorders are often stigmatised and the range of ethical issues raised by the use of genetic information expands when the information concerns them (paragraphs 1.19 to 1.25). The Council considered the special needs of those who are not competent to make their own decisions and made a number of recommendations concerning the use of research data.

  Paragraph 7.27 recommended that ". . . when a person is considered to be incompetent to make his or her own decision about participation in research, data collected for non-therapeutic research purposes should not be used for any other purpose. When an individual participant is regarded as competent, any possible further use of data in the longer term should be discussed with him or her as part of the consent procedure; new research should, as a minimum, be submitted for approval to a research ethics committee before proceeding".

  The Council also made specific recommendations about new research uses of genetic data from patients with mental disorders (paragraph 8.54). The Council also recommended that genetic information obtained during participation in research should not be made available to external agencies such as insurers or employers (paragraphs 7.28 to 7.29).

Dr Sandy Thomas
Director

24 October 2000