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Response to White Paper: Our Inheritance Our Future (2003)


Dr Helen Watt and Anthony McCarthy

Response to the White Paper:-

Our Inheritance, Our Future:
Realising the potential of genetics in the NHS

The Linacre Centre for Healthcare Ethics [1]

Introduction

In the words of its Executive Summary, the White Paper details Government proposals to: strengthen specialist genetics services, build genetics into mainstream services, spread genetics knowledge across the NHS, generate new knowledge and applications and ensure public confidence (p.5).

[2]), of medical conditions. Having said this, there is much in the White Paper we believe should be reconsidered, beginning with what we regard as an excessively sanguine view of the usefulness of genetic knowledge for healthcare purposes now and in the short-term future. To date, there has been relatively little achieved in genuinely therapeutic uses of genetic knowledge, as opposed to discriminatory uses of such knowledge - including those unfortunately endorsed by the White Paper itself.

Our concerns relate to:

Prenatal selection: the lethally discriminatory attitude endorsed by the Paper with regard to genetic testing in utero, and after IVF.

Genetic counselling: in the current social environment, proposing the option of prenatal tests and abortion will be a large part of the counselling provided. Another large part will be proposing the option of contraception or sterilisation. Subtle pressures on couples to avoid having children who may be disabled are likely to emerge from the counselling process, particularly in view of the financial implications of the birth of disabled children for the State.



Communicating genetic knowledge to the public: the media mentioned by the Paper for communicating such knowledge (genetics knowledge parks, the BBC and the Progress Educational Trust) will tend to convey a largely uncritical view of developments in genetics. There are ideological and/or commercial interests involved which militate against a serious questioning of the biomedical establishment.

Prioritisation of genetic research, testing and treatment at the expense of other areas of research and healthcare. (For example, the BioBank project, a study looking at the influence of genes on a large segment of the population, has been criticised by some scientists as disproportionately well-funded in relation to its scientific merit.)

1. Prenatal selection

Screening in utero





[3]



Preimplantation genetic diagnosis





2. Genetic counselling

[4]



3. Genetic screening at birth



[5] It is not enough that parents, scientists or medical professionals wish to obtain genetic information which is not immediately required.

4. Non-consensual testing

[6]

5. Communicating genetic knowledge and funding priorities







The concerns that we have in this area are compounded by the fact that, as the White Paper reveals (6.20), the Government part funds organisations such as the Progress Educational Trust, a group closely tied to the biotechnology industry, which has been critical of government policy only insofar as it has held back industry in certain areas. It is scandalous that such a group is given funding and responsibility by the Government when it effectively acts as a public relations firm for private industry. That public money (£200,000 over the next three years) is to be given to the Progress Educational Trust makes clear that little thought has been given to assessing whether such groups are suitable providers of genetic information to the public.







December 2003



Notes

[1]

[2] On the ethical issues raised by gene therapy, see H. Watt, Gene Therapy and Human Genetic Engineering (London: Linacre Centre and CTS, 2003).

[3]

[4] It may also be useful for couples to meet families of those affected by genetic conditions; however, they should above all have the opportunity to meet affected individuals.

[5] We would exempt from this the case of paternity testing where requested in particular cases, since it is in a child's interest that his/her father be identified early, both for financial reasons and for social reasons connected with the father's sense of responsibility, and the child's sense of identity.

[6]