Genetics and reproductive decision-making: Assessing the public's views 4/8/05. By the Public Health Genetics Unit The Human Genetics Commission has reported the results of a public consultation on the use of genetics in reproductive decision-making.

The consultation ran for six months during 2004. Analysis of the 196 responses revealed a broad range of views on the ethical acceptability of prenatal diagnosis of genetic diseases, prenatal screening programmes, and preimplantation diagnosis (PGD), but somewhat more consensus on the practical issues of service provision within the National Health Service.

There was general agreement, for example, that prenatal diagnostic testing and counselling offered by the specialist clinical genetics service (usually to couples known to be at high risk of an affected pregnancy) is of higher quality than prenatal population screening programmes offered to all pregnant women (for example, the Down syndrome screening programme).

Many respondents felt that the quality of population screening programmes, and the experience of couples who participate in them, would be improved by better training of the staff involved, both in genetics and in the principles and practice of non-directive counselling. Medical professionals also need more time to devote to couples confronted with difficult decisions about screening.

Service improvements will obviously cost money but were seen as particularly important if prenatal screening programmes expand in the future to include a larger number of genetic conditions. Some felt that the future development of non-invasive prenatal testing technology, and the ability to carry out testing earlier in pregnancy, might alleviate these concerns, while others thought that easier testing procedures might make testing virtually automatic so that couples would find it harder to opt out.

Most respondents thought that preimplantation genetic diagnosis (PGD) raised more issues of concern than prenatal diagnosis, mainly because PGD involves use of the difficult and expensive techniques of in vitro fertilisation and single-cell molecular diagnosis. It follows, by this argument, that the technique should not be available to all couples as a 'right', but that society should impose conditions and limitations. Regulation is already in place through ; it was felt by most that this stewardship should continue.

Background: Human Fertilisation and Embryology Authority

The consultation also canvassed views on other means of 'selecting' babies, for example by selection of embryo, egg or sperm donors. Interestingly, there was generally a more relaxed attitude to these methods because they were seen as more akin to the 'natural' process of selecting a reproductive mate. Some uneasiness about the participation of the private sector in offering services in this area, however, led respondents to conclude that it should be carefully regulated.

It is difficult to gauge to what extent the survey is representative of views in the UK public as a whole. By definition, the groups and individuals who responded were those with strong views on the subject and it may be that those with no direct experience of the issues are generally content to trust the 'powers that be' to regulate appropriately. The Human Genetics Commission will take the results of the consultation into account in preparing their report on genetics and reproductive decision-making, due later this year.

Article courtesy of the Public Health Genetics Unit .