Letter from the Nuffield Council on Bioethics
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.
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
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
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
24 October 2000