Ethics and genetic discrimination: living with the genome

Disability, discrimination and the genome.

With every year, the advance of genomic science brings new paradoxes. A report in English newspapers has disclosed a fresh quandary; but it is likely to present itself in Australia before long if it has not already arrived. The science editor of a London daily reported that disabled parents in England are now seeking the right to choose to have disabled children, produced with the aid of new genetic screening tests that are becoming more widely available. According to the report, government advisers in Britain are considering allowing deaf parents to decide to have deaf children on the basis that it might be in the child's interests to be born with the same disability as their parents. The issue was raised by the British Human Fertilisation and Embryology Authority. Reportedly it is considering the ethical implications of the technique that can distinguish between healthy and abnormal "embryos in the test tube". Critics of the proposals were said to be arguing that wide scale introduction of Preimplantation Genetic Diagnosis (PGD) would raise the prospect of disadvantaged babies being conceived and delivered deliberately, because specifically chosen by parents with similar disabilities. Supporters of the proposal have argued that certain disabilities, such as deafness, are so mild that it could, in the long term, be in the best interests of a child to have the same disability as its parents so as to experience a similar life and outlook.

Professor Alan Templeton, Chairman of the Working Group on PGD at the British Authority, reportedly stated that the issue had been raised by patient bodies, including those representing certain kinds of dwarfism. Patients in such bodies have expressed the opinion that they should be allowed to choose children more like themselves. The issue has divided opinions among obstetricians and gynaecologists who advise the Authority's committee. Some, who have considered the matter, regard the notion of choosing deliberately an embryo manifesting deafness or dwarfism genes as pandering to the desires of parents rather than reflecting the best interests of a child. Ordinarily, decisions affecting children must conform to the best interests rule. But where does the best interest of a child lie in a family where a disability exists in one or both parents? A spokesman for the National Deaf Children's Society explained concern that he felt about genetic testing:

"Naturally I'm concerned at the possibility of it being used for 'cleansing' of deaf children but it can be a great tool in early diagnosis for hearing parents in order to prepare all the support for their deaf children".

The recent developments in technology, including cochlea implants, have revolutionised the assistance that can be given to those deaf persons who desire to improve their hearing mechanically. But is the logic of such technology the ultimate removal from the human family of deaf persons, diagnosed by genetic testing? Is this a legitimate advance of science and the removal of a disability that is a burden on the person affected, his or her family and perhaps the state? Or is it an attempt to manipulate science to perform a form of disability cleansing? Does one's answer to these questions reflect a stereotyped conception of the perfect child, which itself can be manipulated by media and public opinion? Given that most parents are heterosexual, few might naturally feel a strong desire to have a child who was homosexual. Yet, in the past, a proportion of every society has been homosexual. If the criterion is identity with parents, where does the application of that criterion stop? In the randomness of nature there were disabilities, it is true. But there was also variety and difference that contributed to the world of dazzling variety, as we know it.

The obligation of engagement.

At least the IBC of UNESCO is listening to the voice of patient organisations. An expression of solidarity with patients' associations was adopted at the meeting in Quito. It was not very specific. It did not go into the details of the measure of the solidarity and the implications of it for the issues, some of which I have outlined. It will be important in the future work of the IBC that patients' organisations should be regularly heard. And when they are heard, the question will have to be answered.

When is human variety a disability? Some genetic conditions are distinctly bad news. There is no inherent beauty in prolonged pain and human suffering, genetic or otherwise. There is no glory in the premature termination of sentient human life and sensibility. Relieving pain and suffering and promoting life and sensibility are generally good things. They are worthy objectives of morality and of law. But sometimes disability depends upon the eye or ear or mind or heart of the beholder. Getting agreement on these issues is difficult locally, more difficult nationally and almost impossible internationally. Yet they undoubtedly present an international challenge. UNESCO's IBC does not have the option to ignore the puzzles of genomics nor do we in Australia have that option. None of us has such an option. To ignore is to decide.