Knowing what's best for people

April 21 2002

Three bio-ethicists, three conflicting points of view. On the question of whether a deaf, lesbian American couple who used a deaf sperm donor to increase their chances of conceiving a deaf child, Catholic ethicist Nicholas Tonti-Filippini says, "I condemn out of hand that selection is allowed for anybody". He argues that a couple making such a choice is a logical consequence of the prenatal selection that is already taking place. "If an IVF team is prepared to do selection in order to eliminate a child who has some kind of difference like dwarfism, on what principled basis could they reject a parent who wanted to use IVF to have a child who was deaf?"

American sperm banks screen out sperm from disabled donors and did reject the couple, who went on to find a deaf donor themselves. Peter Singer has suggested one ethical basis for such a rejection. Professor Singer's argument (as reported by fellow ethicist Julian Savulescu) is that IVF ought not be used to select deafness because the birth of a disabled child "reduces the amount of wellbeing in the world". Professor Savulescu disagrees on the grounds that the argument is "based on an arrogance about knowing what's best for people". He argues that the basic principle in the case "is one of respect for procreative autonomy, respect for people's own decision about the kind of children they want to have". However, he adds a curious rider: "I personally believe that it's better to be hearing than deaf . . . so I think that what this couple has done is the wrong thing." But this kind of detachment, although logically consistent, may be of cold comfort to a couple wrestling with an ethical dilemma themselves.

In recent years, it has often been observed that medical technology is like a runaway train, leaving the ethicists stranded on the platform and trying to make sense of what has flashed by them. Medical ethics is too important to be left to scientists, they say, but perhaps it is also too important to be left to the ethicists alone. In a secular age, in which ethical principles are often regarded as relative rather than absolute, we have to somehow find a way to agree to a standard of behaviour regarding babies who begin their life in a laboratory. Yet, by disagreeing, the ethicists are doing society a service by drawing out the issues that go on to become part of the public debate. Until now, our society has not agreed with Tonti-Filippini that embryo selection ought not to be allowed at all. Pregnant women - whether or not they are in an IVF program - routinely undergo tests for conditions such as Down syndrome and cystic fibrosis. We have adopted the view that those parents who wish to avoid giving birth to a disabled child have the right to do so, and yet (so far) this has not led to a condemnation of those parents who do not make such a choice, nor has it led to a greater intolerance of disability. (Which is just as well, because genetic testing alone will never eradicate disability. British author and sociology researcher Tom Shakespeare says that one in 100 babies is born with a disability but one in eight people is disabled.)

The advent of pre-implantation genetic diagnosis (PGD) allows this testing to proceed one step further. This is the technology that has the potential to create "designer babies". A Melbourne couple have sought permission to use the technology to conceive a baby whose umbilical cord blood will be used to save the life of their daughter, Christina. Christina has Fanconi's anaemia, a rare, fatal genetic disease. Without a bone marrow transplant, or the infusion of matching umbilical cord blood, she will die. Advocates of the procedure say the babies are not "designer babies" - they are wanted for themselves, and will also be able to save a life. Victoria's Infertility Treatment Authority was right to approve an interim policy allowing the procedure to go ahead. Another recent case - the family wishing to use PGD to screen out healthy female embryos carrying the haemophilia gene - seeks to take the use of the technology a step further again. Haemophilia occurs only in males, but daughters born to mothers carrying haemophilia have a 50 per cent chance of being a carrier. The family is attempting to break the genetic chain by avoiding the birth of a daughter carrying the gene. In this case, PGD will not save a life although the arguments for this design choice - avoidance of haemophilia in future generations - is compelling.

The lesbian couple who sought to give birth to a deaf baby did not use PGD, but took a calculated gamble that the laws of genetics would give them the kind of baby they wanted; in this case a baby that will not pose a cultural threat to its parents. It is a form of narcissism for families to impose this type of limitation on a child, and it is behaviour of this kind that is conjured up by the media term "designer babies". The case tells us that the dark side of technology, of which the ethicists warn, is close at hand. Vigilance and debate are needed to keep it at bay.