GENETIC DILEMMAS: REPRODUCTIVE TECHNOLOGY, PARENTAL CHOICES AND CHILDREN'S FUTURES

The concept of choice is at the heart of this book and the context of that choice is in the practice of counselling in reproductive technology as it has been affected by developments in genetics. Although the book is written from within the legal and professional frameworks of the United States, the issues are equally important wherever such technologies are available.

Each chapter begins with well-articulated case studies: they pose the doubts Davis experiences about the untrammelled affirmation of a parental right to choose what they take to best for their families and themselves according to their own definition of the good. The good of the child affected by such choices has, states Davis, been relatively given little weight. The alternatives to parental autonomy, - state-sponsored eugenics programmes or a heavily paternalistic role for health-care professionals, - are unacceptable not least because of their historical association with tyranny.

The Human Genome Project has already made diagnosis of genetic disease technically easier and more efficient. However, where there is no possible present treatment, the alternatives of advocating abortion following amniocentesis or using in vitro fertilisation and subsequently discarding unwanted embryos, are not unproblematic ethically. It is not the case that universal ethical pluralism renders such decision-making innocuous. Anti abortionists in America threaten death to medical staff who support parental choices of this sort.

The problems which I found most troubling are central to this extremely thought-provoking book. With the author, I also believe that counsellors should give accurate and comprehensible information to their clients to allow them to make informed choices. It is a canon of counselling in a medical context that it be non-directional. Such advice is, in principle, meant to be value neutral. But one may have one's doubts about this in practice and the author is right to draw our attention to the survey of British obstetricians which revealed that 13% believed that if a foetus has a genetic abnormality which was an avoidable mistake and not the 'luck of the draw', as it were, then 'the state should not be expected to pay for the specialised care of a child with a severe handicap where the parents had declined the offer of prenatal testing' and , implicitly, the termination of the pregnancy would be an offer such parents could not refuse. This view is hardly compatible with untrammelled non-coercive parental choice and Davis is right to explore this issue.

But, in the absence of a sex-linked disorder, might a geneticist not challenge the values of a couple who wanted amniocentesis followed by abortion for sex-selection only? By respecting parental choice absolutely, this must follow. Davis' thesis is that however important parental autonomy might be, there is case to be made for the prospective child to be given an open future. His examples are controversial. Is counselling powerless in the face of what may be immoral requests from clients? For example, Davis cites as an informative parallel, the famous 1972 United States Supreme court case of Wisconsin vs. Yoder. This case tested the right of Amish parents to deny their children formal education beyond the primary level. Their case was that their culture and religion would be threatened. The State's case was that to deny education was to restrict the future choices of these children and also that the State had a right to insist upon an educated citizenry. The Amish won this case.

Deaf people, (as opposed to deaf people spelled with a lower case), are proud of their culture, likening their handicapped circumstances as societally induced, similar to the disadvantages generated by racism or sexism. If Deaf parents want to guarantee, through the application of genetic screening and in vitro fertilisation, that only a foetus who will grow to become a deaf child shall be implanted, does this infringe the rights of such a child to choose her life from as wide a range as possible? Is the Kantian principle that persons should be treated as ends in themselves infringed when parental autonomy forces children to live restricted lives? And what is the role of medical staff when confronted with such parental values and invited to counsel in a 'value-free' way??

Disabilities activists have charged that using genetic testing and abortion to avoid the birth of children with disabilities devalues and disrespects the lives of people now living with those same conditions. Parents who demand the right to choose genetic enhancement of human attributes already occupy morally uncertain ground relative to parents campaigning for improved genetic screening to detect disease. Ought parents have the right to choose to have a genetic disability expressed in their offspring? Is it possible to safeguard the legitimate rights of parents against those who would usurp them whilst using law and workable professional codes to discriminate between legitimate and illegitimate choices being foisted upon children? Dena Davis has written a very clear, readable and well-informed book which those obliged to make decisions in this field of ethics will find worth close attention.