When usefulness determines the right to life

The vexed question of when human life begins, and when a human being acquires rights, refuses to go away, writes Breda O'Brien…

The vexed question of when human life begins, and when a human being acquires rights, refuses to go away, writes Breda O'Brien

In recent months we have seen the European Court of Human Rights rule that it was beyond its competence to decide: nations will have to make that decision for themselves.

We have seen ultrasound pictures of tiny creatures in the womb "walking", sucking thumbs and crying. Just hours before a scheduled abortion for alleged handicap, a woman delivered a healthy baby at 25 weeks. Stories of botched abortions with babies denied neonatal care and left to die in stainless steel dishes have been aired. Lord David Steel, architect of the 1967 Abortion Act, has called for a 12-week limit on abortion.

The rights of embryos are even more contentious. The British Human Fertility and Embryology Authority (HFEA) relaxed its rules for a Co Down couple this week. The Fletchers' lively toddler, Joshua, suffers from a rare anaemia that requires regular, painful treatment. They have received permission to use pre-implantation genetic diagnosis (PGD) to screen embryos, in order to produce a baby who will have a tissue match with Joshua, which may provide him with a cure for his illness.

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Any parent will sympathise with the Fletchers. There are few things more harrowing than watching your small child suffer and being powerless to help. Until this week being screened to help a sibling was not allowed because there was no benefit to the embryo.

If the embryos were likely to be themselves affected by a genetic disease, they could be screened, and destroyed if shown to have genes likely to lead to the development of that illness. Rather oddly, this was judged to be of benefit to the embryo, presumably because the ones who are destroyed would not have to face life with a disease, and any embryos implanted would have a far greater chance of health.

In recent years this distinction meant that the parents of a child called Charlie Whittaker could not avail of treatment in Britain because his siblings were unlikely to have his particular ailment. However, the parents of a boy called Zain Hashmi could receive treatment because he has thalassemia, which is genetic, and his parents are carriers.

The Hashmi family were granted permission for PGD, not just to screen out embryos which would develop the disease, but to obtain an appropriate tissue match for Zain. Their story has no happy ending. Several IVF treatments have failed, and due to the threat to Mrs Hashmi's health, they have now ceased trying.

On the other hand, Jamie Whittaker, conceived after PGD in the US, involving the death of some eight embryos, provided a near-perfect match for his brother, Charlie. To date it is not clear if the Whittakers actually went ahead with treatment for Charlie, because it also carries risks. Cord blood donation is painless for the donor, but bone marrow transplant is much more problematic, including a small risk of death for the recipient.

Scientists are making discoveries on a regular basis that testify to the intricacy and complexity of the embryo, which until recent times was dismissed as a "blob of cells". It is convenient to forget that all of us were once such blobs.

The central issue is whether parents' love for a child entitles them to create many embryos and select for life one that meets their requirements, no matter how altruistic their motives. There are other issues, such as the fact that it is not clear how a child would regard being selected as a tissue match, or how such a child would feel if treatment failed.

Not to mention how he or she would feel about the other siblings who failed to meet requirements. It changes completely the relationship between child and parent, because the child has ample evidence that had the genetic chips fallen otherwise, he or she would not have been allowed to live. The harsh reality is that these embryos' right to life is being determined by their usefulness to another.

Mohammed Taranissi may be the doctor who carries out PGD for the Fletcher family. He would like to see the use of PGD extended still further. He has been approached by couples who carry genes for so-called "early onset" disease, such as a type of Alzheimer's that typically begins in middle age.

He believes that it is right to allow such couples to screen for this gene and eliminate accordingly.

He sees no difference between providing such a service and aborting a pregnancy after a positive test for Down's syndrome. He is quoted in the Guardian this week as saying: "[aborting babies with Down's syndrome] seems to be common practice. Everybody does it and nobody questions the ethics of that."

It is rare to see a reproductive specialist equate PGD and abortion. Most are at pains to declare that they are very different.

Yet, of course, Mohammed Taranissi is right. The only difference between aborting a baby with Down's and selecting an embryo with a gene marker for early-onset Alzheimer's for extinction is an age difference of weeks or months.

Still basking in the afterglow of the Special Olympics, we may be taken aback by the apparent callousness of his remarks. However, it indicates how genetic screening has blunted sensibilities in Britain. It is, of course, not true to say that no British person questions the ethics of aborting Down's babies, but it is true that it is less and less common to carry one to term.

When a group becomes less visible in society, it becomes easier and easier to dismiss their rights. When human life is visible only to scientists, as in the case of PGD, we allow science to dictate whether she or he will live or die, ignoring human solidarity.

Rumour has it that the Irish committee charged with providing guidelines in this area will follow the HFEA model, which will allow for disposal of embryos, PGD and so on. If that rumour is accurate, we will have learnt nothing from Britain.

Recent events should show us that in this area, talk of slippery slopes is no longer accurate. It is more like the cliff over which lemmings, despite the evidence, rush to throw themselves.