The Human Genetics Commission’s consultation Choosing the Future: Genetics and reproductive decision-making closed on 15 November 2004. The consultation covers a variety of issues including designer babies, preimplantation diagnosis, prenatal screening and genetic counselling.
The HGC will report to ministers in ‘late 2005’.
CMF’s full submission is available on our website. The key points we made are as follows:
- All people with congenital disability, genetic or otherwise, should be treated with the utmost respect at all stages of development. Resources for their treatment, care and support should be a top healthcare priority. Any policy that has the effect of identifying and eradicating groups of individuals with certain conditions from our community, whether based on expectation, coercion or free choice, is essentially eugenic.
- Screening of embryos and fetuses as a prelude to disposal or termination, if it is to be allowed at all, should only be carried out for disorders qualifying under section 1(1)(d) of the Abortion Act 1967 (ie. ‘there is a substantial risk that if the child were born it would suffer from physical or mental abnormalities as to be seriously handicapped’). In addition ‘serious handicap’ must be objectively defined.
- Provision of screening tests for termination for any given condition should never be carried out at the expense of providing proper treatment, support and palliation for existing individuals with that condition.
- No screening for any given condition should be offered unless there is proper provision for all parents being screened to give fully informed consent to screening, to discuss with a fully trained genetic counsellor the implications of the diagnosis, prognosis and intervention/treatment options, and to have the time and support to consider available options and come to a decision.
- We believe that most antenatal screening currently being carried out in General practice and in antenatal clinics is being done without fully informed consent or adequate counselling and that a conveyor belt system of ‘prenatal eugenics’ already operates. This needs to be urgently addressed before genetic screening is made available for more parents or for a broader range of conditions.
- We are gravely concerned that widely available prenatal screening for termination will lead to the eradication of whole categories of people with specific genetic disorders from our community and subsequent stigmatisation, discrimination against and inadequate support for individuals and families who are perceived as ‘escaping through the net’ and thereby creating an intolerable burden for society.
- Primary prevention (ie. genetic screening of sperm and eggs or advising parents not to have children), encouragement of adoption, and tertiary prevention (treatment of handicapped individuals prenatally or postnatally) are ethical alternatives to so-called secondary prevention (prenatal diagnosis and disposal/abortion) that should be vigorously promoted and adequately resourced.
- See 'The consultation process' outlined on page 6 of the consultation document, available online in pdf format at www.hgc.gov.uk/UploadDocs/DocPub/Document/ChooseFuturefull.pdf
Article written by Peter Saunders