The European Parliament's Temporary Committee on Human Genetics and Other Technologies in Modern Medicine has produced a report that, while urging support for research in genetics and related technologies, recommends a "harmonised" European regulatory regime that would, for example, prohibit the use of genetic testing for any "non-medical" purpose such as in connection with an application for insurance or employment. The report urges the setting up of a robust system for evaluating and licensing genetic tests, which are not adequately covered under existing procedures, and expresses the view that a regulatory regime for such tests - in particular, "predictive" tests - should incorporate ethical principles such as informed consent, privacy, "the right to know and not to know" and the need for "expert genetic counselling", as well as outlawing all forms of discrimination against individuals or their families on the grounds of their genetic endowment. The report also recommends the setting up of a European laboratory network for testing for rare genetic diseases. In comments that might be taken as applying to genetic databases such as the proposed UK BioBank (formerly known as the UK Population Biomedical Collection), the committee expresses the opinion that individual genetic information should not be made available for commercial use, even if the data are anonymised. The report is somewhat more upbeat on the subject of pharmacogenetics, calling for Europe-wide cooperation between the public and private sectors in the development and testing of new biomedicines that could benefit European citizens and industry. In the area of patenting, the report recommends that the European directive on the legal protection of biotechnological inventions should be kept under review, in particular with regard to the difficulty of distinguishing between an invention and a discovery when dealing with the patenting of human gene sequences.
Finally, the Temporary Committee suggests that the ethical principles governing research activities under the sixth framework programme, which is currently under consideration by the European Parliament, should include a ban on the use of somatic cell nuclear transfer ("therapeutic cloning") in stem cell research, and a ban on the creation of human embryos specifically for research purposes. The European Parliament is expected to vote this month on both the sixth framework and the Temporary Committee's report.