MPs seek to control medical geneticsBMJ 1995; 311 doi: https://doi.org/10.1136/bmj.311.6999.216 (Published 22 July 1995) Cite this as: BMJ 1995;311:216
The British parliament's latest attempt to keep pace with advances in human genetics has led to a recommendation for a statutory commission with powers to regulate the medical uses of genetics. The proposal is contained in a report this week from the House of Commons Science and Technology Select Committee and pre-empts the more cautious government plan for a non-statutory advisory body.
An eight month inquiry by the select committee admits to being prompted by the public fascination for genetics and DNA as reflected in science programmes, block-buster movies, soap operas, and courtroom dramas. As genetic knowledge can be misused, the report says that the challenge is to ensure that society gains the benefits while avoiding the abuses.
The report notes that even the most cautious commentators expect genetic science to transform medicine, though it may take some while before treatments based on genetics become available. Among the expected benefits are better diagnosis of both common and rare disorders; better treatment, including drugs designed to fit precisely the molecules implicated in diseases; and new gene therapies. Meanwhile, the most widespread use of genetic knowledge will be in diagnosis and in screening--requiring careful control to ensure that it is offered appropriately and the necessary counselling given. The committee cautions against the advent of unscrupulous commercial screening preying on the public's fear of genetic disorders. It suggests early legislation to regulate practice.
New controls over medical genetics are also called for in the report. The aim is to approve screening programmes, advise local ethical committees, disseminate best practice, and rule on whether particular types of screening, such as prenatal diagnosis, should be provided or proscribed. Control would be exercised by the proposed Human Genetics Commission, which would conduct research into the ethical, legal, and social issues raised by genetics and review the law and practice of patenting.
Professional training in genetics is found to be inadequate. The committee agrees with the BMA that the science, ethics, and principles of genetics should be included in clinical examinations. As genetics comes to play a greater part in mainstream medicine, more practitioners will need genetic knowledge. The NHS has been a “superb resource” for genetic research, but it needs to be safeguarded against possible ill effects of the reforms.
Legislation is proposed to make the misuse of genetic information a criminal offence. The individual's right to maintain the privacy of genetic information should be paramount, even in the case of a refusal to share it with relatives who might be affected. The insurance industry should stop requiring people seeking insurance to reveal genetic information, or else face legislation.
The report criticises the reluctance of the pharmaceutical companies to collaborate with biotechnology companies or academics. The universities are urged to introduce “industrial sabbaticals” to help academics commercialise their inventions.