Genetics, the Committee believes, excites more attention than any other branch of science because it is in a state of rapid expansion and could have profound effects upon all of us. Too often the public is less than well-informed on the subject as a result of sensational movies, court dramas, and soap operas in which the imagination of their authors far exceeds their knowledge and understanding of the science. Newspaper reports of advances in genetics can raise unfounded hopes that cures for genetic disorders are not far away. The Committee’s recommendation that the ways in which genetic information is used should find a place in the National Curriculum is, therefore, very welcome.

The Committee is rightly concerned that the individual’s right to confidentiality about his or her genetic constitution is maintained. They express concern about the possibility of the results of genetic screening becoming a cause of discrimination in employment and note that at present they know of no genetic diagnosis which would need to be revealed to an employer. They are also concerned that genetic information could be used by insurers to offer different premiums to genetically ‘good’ and ‘bad’ risks. Again, at present this is not a problem but as our knowledge of the human genome increases it could well become one.

Life insurance could be one of the first areas in which a greatly increased knowledge of human genetics affects large numbers of people. Insurance companies are used to offering different premiums to different health risk groups, smokers and non-smokers for example. It seems unlikely that in the long run they will not wish to use genetic information in the same way. The Committee recognises that this is a difficult question and suggests that the insurance industry be given the chance to find an acceptable solution and, failing that, suggests that Parliament should impose a solution by legislation. There is a danger that the simplest solution, prohibiting insurance companies from using genetic information, could become law. While in theory this may appear to be the fairest solution, it could in practice be the worst. Insurance companies based outside the UK could offer cheap life insurance to people with good genetic screening results leaving the rest unable to find life insurance they can afford.

The most important recommendation of the Committee is for the establishment of a Human Genetics Commission. This body would combine the regulation of genetic medicine with a government advisory role. It would monitor the availability of genetic medicine, approve screening programmes before their introduction, and in general have statutory powers to regulate all aspects of genetic medicine in the UK. In addition the Commission would be expected to advise the government of developments in genetics, make an annual report to Parliament, recommend research programmes to the MRC and ESRC, and to commission research itself. It is suggested that the Commission have no more than 19 members and that the majority should have no professional or financial interest in genetics.

It seems probable that such a Commission, or something very like it, will be established. How successful it would be in the form proposed by the Committee is, however, more questionable. Some of the Commission’s proposed regulatory functions would probably overlap with already established bodies and it is not clear why it should itself commission research. It is not easy to see how its regulatory functions are to be kept separate from its advisory ones and, if they are not, there is the danger that its advice will too often be a request for more powers. While there would be little public confidence in a Commission composed entirely of geneticists, one in which a majority of the members have only a limited knowledge of genetics might inspire little confidence in the practitioners of genetic medicine.

While I have been critical of some aspects of this report I believe it is an extremely important document which gives a sound basis for the necessary ongoing discussion about the role human genetics and its consequences is to play in our future. It is essential reading for everyone who intends to take part in this discussion.

John Timson