Taboos: Diagnosing the problem
Ann Furedi and Frank Furedi argue that couples, not doctors and experts, are best placed to decide whether to have a child with an inherited disability. This is an edited version of their submission to an official public consultation on preimplantation genetic diagnosis
Preimplantation genetic diagnosis (PGD) has great potential for preventing inherited genetic diseases. The technique was developed a decade ago, to meet the needs of those with an increased risk of passing on an inherited disorder who wanted to maximise their chances of having children free from the condition. It is a two-stage process, in which in vitro fertilisation (IVF) is used to create embryos that are then tested for a particular genetic disorder or to establish their sex (where the disorder is sex-linked). Embryos that are not affected by the disorder can be selected and transferred to the uterus in the hope that a normal pregnancy will develop.
PGD does not guarantee a healthy child. It is not 100 percent accurate and, even when it works, it is possible that the child could be affected by a disorder other than that for which it was tested. Nor does PGD protect against the hazards of pregnancy and birth that can cause a child to be born with a severe abnormality. But PGD does offer some couples affected by specific genetic abnormalities a chance to start a pregnancy on the same basis as anybody else - and that is cause for celebration enough.
Before the development of PGD, the choices facing couples who knew they were affected by genetic defects such as cystic fibrosis, Duchenne muscular dystrophy, and Huntington's disease were stark. Many decided not to have children rather than take the risk of bearing an affected child. Others would take their chances, proceed with a pregnancy and, when it was sufficiently advanced for the fetus to be tested for a particular condition, seek diagnosis where possible through antenatal tests like amniocentesis and request the termination of affected pregnancies. Many of those who first benefited from PGD had endured several late abortions, their hopes of a normal child repeatedly dashed after five months or so of pregnancy.
But perhaps surprisingly for a clinical procedure with the potential to alleviate so much distress, PGD is currently under ethical scrutiny. Faced with a growing public interest in genetics and concerns about the 'abuse' of technologies, the Human Fertilisation and Embryology Authority (HFEA) is conducting a public consultation to test public attitudes to PGD. An HFEA working party has issued a document that 'aims to consult on whether, given the potential use of PGD, there are any uses which should not be permitted or which should only be permitted under certain circumstances'.
This consultation will obviously attract the attention of those who would outlaw all tampering with nature. It is also likely to attract considerable comment from an increasing vocal minority which believes that antenatal screening to avoid the birth of those with genetic defects is eugenic in intent. Given this, it would be wrong for those of us who applaud such developments to absent ourselves from the debate. In the spirit of encouraging a considered response from readers of LM, we outline here several principles that we believe should underpin the discussion.
The consultation document is, like most HFEA consultation documents, informative and balanced in its presentation of the issues. Many questions are put, many issues posed - but what is of particular concern is its unspoken assumption that PGD needs to be regulated. The main aim of this document seems to be to identify uses of PGD that should either not be allowed or only be allowed in specific circumstances. It seeks to define what might constitute an abuse of PGD and, having come to a conclusion about abuse, decide on how such abuses may be prevented. Issues raised by the paper include, for example, who might have access to PGD and whether genetic conditions considered sufficiently 'serious' for testing should be defined - sex selection for social reasons is already banned. Concerns are raised about whether it is appropriate for embryos that carry a condition but are not actually affected by it to be rejected, and whether it can ever be ethical to test for conditions that may only affect a person late in life. One issue that has already attracted controversy is whether it can ever be right deliberately to cause a child to be born with a disability - considering the hypothetical case of a couple who preferred the use of genetically abnormal embryos to healthy ones.
Any one of the issues raised in the paper could fuel endless discussion at a seminar on medical ethics. But we must keep a sense of perspective about not just what is possible (by the furthest stretch of the imagination), but what is probable. PGD is a technical service with the potential to affect positively the lives of families, and it would be a tragedy if, distracted by concerns about 'abuse' and the need to 'restrict', we lose sight of the benefits it offers. We feel that a discussion about the acceptability of PGD should be built on by the following beliefs.
Developments in PGD technologies and services are unequivocally beneficial to individuals and to society. Most people wish to maximise their chances of raising a healthy child, and for those at increased risk of bearing a child with a genetic disorder PGD has the potential to lift their reproductive experience out of a nightmare of uncertainty.
Regulations concerning PGD should be 'permissive' rather than 'restrictive' and should be primarily concerned with protecting couples from exploitation, by those who seek to profit from fertility services, and ensuring that services operate at the highest possible standard. It seems bizarre to concern ourselves with the need to restrict access bureaucratically to a technique that requires such endurance from those who undergo it - and is so expensive to provide. Fears that IVF would lead to frivolous requests for treatment from women who disliked sex have never been born out in practice. Why should we assume that people are so perverse as to wish to engage in PGD without 'good reason'?
We would urge that the HFEA steers decisively away from any attempt to define what genetic conditions constitute a 'good reason' for permitting PGD and which do not. The decision about whether a condition is reason enough can only be decided by the couple who face the prospect of raising an affected child. Ethicists, HFEA members and doctors may have well-formed and informed opinions, but at the end of the day they return to their own homes and families. The couple they allow or refuse access to PGD live with that decision for the rest of their lives. A discussion about a reasonable course of action in the management of specific conditions is best left to the judgement of a couple and those involved specifically in their care.
Couples forced to reflect on their unique circumstances are best placed to make the decisions that affect themselves and their families. They do not need ethical 'experts' to impose a moral structure on their decisions. People are generally disposed to display rational judgement about serious decisions, and act with a sense of conscience. Sometimes, the option chosen by a specific couple may run against the current of public opinion. It is even possible to imagine a situation where one feels morally outraged by the reproductive desires of a couple deciding to use this technology. Many of us will be perturbed by the thought of a couple deliberating 'creating' a deaf child. But most of us would vigorously oppose any attempt to impose regulations that meant that a disabled couple could not 'naturally' conceive a child even though it were bound to be disabled. And we would certainly oppose compulsory antenatal screening or compulsory abortion following a positive diagnosis of a genetic problem. Our views should be informed by the principle that people should be free to make their own reproductive choices independently of the state.
On the other hand we should categorically reject one concern aired in the consultation document, and vocally expressed by some activists for disability rights - that PGD per se devalues the lives of individuals affected by a genetic abnormality. The choices that people make about their own lives and families do not represent a statement about other people. Couples who decide not to have children are not usually antagonistic to children in general, just as couples who have just one child do not do so to make a statement against large families. Those who aspire to have fully-abled children do not devalue disabled children - any more than those who have children that are born suffering from a genetic condition devalue those who are born healthy.
The overriding ethical principle that should inform discussions about the new reproductive technologies is that the right of individual choice should be respected - unless, in the exercising of that choice, the rights of another individual are violated.
Those responsible for drafting guidance on PGD should assess carefully which areas are genuinely in need of ethical regulation and where regulations are considered simply because some believe it is inappropriate for such matters to remain unregulated. PGD may appear to deal with decisions about the creation of life - but then so do the decisions we take about when and with whom we have children. Hopefully the HFEA will never be charged with providing a regulatory framework for this.
The consultation document on PGD is available on the HFEA website, www.hfea.gov.uk. Responses are to be submitted to the HFEA by 31 March 2000.
Ann Furedi, director of communications at the abortion provider British Pregnancy Advisory Service, and Frank Furedi, reader in sociology at the University of Kent at Canterbury, are writing in a personal capacity
Reproduced from LM issue 127, February 2000