Saviour siblings: commodity or boon?
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In the U.K., parents with a child suffering from a genetic disease can choose embryos that have a perfect tissue match with an older sibling. The baby's stem cells are then transplanted to the sibling to cure its disease.
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PARENTS IN the U.K with children suffering from some potentially fatal genetic disease can heave a sigh of relief. Thanks to the Human Fertilisation and Embryology Authority (HFEA), the last hurdle to creating babies specifically to save older siblings suffering from an incurable genetic disease has been cleared. The issue was mired in controversy with pro-life people opposing permission tooth and nail.
But what makes the technology controversial in the first place? Pre-implantation genetic diagnosis (PGD) allows the removal of a cell from an embryo created through in-vitro fertilization. The cell so removed is studied for any genetic disorders. This technique combined with tissue typing allows the parents to choose the embryo that has a perfect (tissue) match with the sibling suffering from the genetic disorder. Once convinced of a match, the embryo is implanted into the mother's womb and the mother allowed to proceed to full pregnancy. The stem cells are removed from the newborn's umbilical cord at the time of birth and transplanted to the older sibling suffering from the disease. Once transplanted, the older sibling's ailment is thus cured.
Contentious issue
But what makes the issue contentious is the destruction of all embryos that lack the match. Add to this the view held by the pro-life people that producing a baby with the express intention of using its stem cells to save an older sibling is commodification of life. Spare parts, transplant source, potential life savers are some of the labels that such babies get. To quote David King, Director of the pressure group Human Genetics Alert, "it is wrong to create a child simply as a means to an end, however good that end might be, because to do so turns the child into an object." The opposition stems from a basic tenet that pro-life people hold that any embryo destroyed wantonly is a person killed. In other words, embryo destroyed is a murder committed. "In essence it is about people getting killed to save a child" they argue. And if this is accepted as correct, the technique becomes morally and ethically wrong. But HFEA thought otherwise.
In reality, couples choose to have babies for various compelling reasons — to save a marriage, to beget a baby of a particular sex, companionship for the older sibling, to name a few. Going in for more children in utter desperation to find perfect (tissue) match is one of them. Science and technology have only helped such couples increase their chances of success. "The decision to have a child to save another child is a genuine pro-life choice," said Dr. John Harris, professor of bioethics at the University of Manchester in a report in the New Scientist.
No more double standards
Even as the pro-life groups are up in arms, the double standards that were practised until HFEA came out with this notification come out clearly. For instance, it was considered morally and ethically right to do pre-implantation genetic diagnosis and tissue typing to ensure that the embryo was free from a particular genetic disorder that its parents suffer from.
According to a report published in the New Scientist, some 300 healthy babies have been born in Europe in the last three years after being subjected to such screening.
The number of embryos that were summarily destroyed in the process is anybody's guess. And pro-life claims that embryo destroyed is a person killed. But they justify this double standards though. According to them, it is ethically right to indulge in such a practice if it is for the baby's good and not otherwise.
But the biggest hypocrisy till date was that permission was granted to parents to use the technology to create a life-saving sibling when the parents suffered from a genetic disorder but were denied permission when the older sibling suffered from a genetic disease that came about through sporadic mutation that was not passed on by parents.
Thus, Raj and Shahana Hashmi's son Zain who suffered from beta-thalassaemia was permitted a saviour sibling but not Charlie Whitaker who suffers from a sporadic mutation (disorder) called Diamond Blackfan anaemia, which was not passed on by the Whitakers. Sufferers of Diamond Blackfan anaemia produce too few blood cells and usually die before the age of 30.
"As doctors we believe that where technology exists that could help a dying or seriously ill child without involving major risks for to others, then it can only be right that it is used for this purpose," Dr. Nathanson had said referring to Whitaker's case. Neither did the pro-life groups' opposition that the procedure harms the embryo stand scrutiny as HFEA was finally convinced of its safety. "We could not possibly approve the procedure if the child concerned was going to be put through any pain and distress," said Dr. Vivienne Nathanson, head of ethics and policy at the British Medical Association (BMA).
The British Medical Association staunchly supports the technique to save an older sibling. The very fact that it is permitted in embryos when the parents suffer from a genetic disorder themselves is proof enough.
Avoiding the slippery slope
The green signal to pre-implantation genetic diagnosis comes with a catch though. It will be permitted only when the disease is very serious and life threatening, and when there is no other way to treat the child. Dr. Michael Wilks, who chairs the BMA was quoted to have said in BBC News that though it was relaxing the principles, it was talking about a very contained situation, not about a free-for-all.
And that should ensure that it avoids the slippery slope. `Designer babies' chosen for eye colour, intelligence, skin texture or any other parental whim, a fear so often voiced by pro-life groups, should be stuff befitting an engrossing fiction rather than reality.
Tough regulation is the solution. Currently the U.K is the only country that has some form of regulation in place. In the U.S., for instance, `saviour sibling' is totally unregulated. That helped the Whitakers to cross borders and try their luck in the U.S. in 2002.
R. Prasad
in Chennai
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