Are saviour siblings a humane and proper use of reproductive technology?
This essay was written by Tim Harrison and was first published in the 2008 Mill Hill Essays.
Civilisation and technology proceed hand in hand, but with the technology comes the need to exercise responsibility. The technique of in vitro fertilisation for humans was developed in the United Kingdom by Patrick Steptoe and Robert Edwards. The first “test-tube baby”, Louise Brown, was born in Oldham, England, as a result on July 25th, 1978, sparking a wave of debate throughout the world. Technology has progressed further now, with the ability to execute pre-implantation genetic diagnosis (PGD) on embryos. This has made possible the idea of “saviour siblings”. Currently, in the UK, the Human Fertilisation and Embryology Authority (HFEA) are called upon to decide whether or not to allow the creation of “saviour siblings” and they have developed guidelines that help them decide when the technology should be used.
A “saviour sibling” is defined as any offspring conceived in vitro to increase the chances of survival or quality of the life of one of its siblings. Usually this aid is in the form of an organ or tissue donation. To create a “saviour sibling” one must first perform in vitro fertilisation; the mother is usually given medication to induce ovulation and the eggs are then collected and are mixed with a sample of the father’s sperm. Within three to four days any conceived embryos will have divided via mitosis to eight cells. At this point two cells from every successfully conceived embryo undergo a molecular analysis. The DNA is removed, amplified via a polymerase chain reaction and the genetic code is identified to determine the inherited features of the embryo. Up to three embryos that are viable as a “saviour sibling” can be implanted in the mother’s womb – the rest are terminated.
“Saviour siblings” act as a life saving tool in the battle against rare diseases which require donors. Zain Hashmi, a sufferer of the rare blood disorder Beta Thalassaemia, faced death without a bone marrow transplant and neither of his parents were tissue matches. With such long waiting lists for donors his parents applied to the HFEA for permission to create a “saviour sibling” and a licence was granted. The child produced was a perfect match and the umbilical cord was used to save his life. Having studied this case it may be difficult to see the disadvantages of “saviour siblings”. The conceived child can be selected to ensure he will not suffer from the hereditary disease; there would be no need to fund treatment of genetic disease that costs millions of pounds over the lifetime of one patient2 and, it may allow sufferers’ symptoms to be treated and even cured. Nevertheless, there are potential problems.
The case of Charlie Whitaker had many similarities to the above example; however, the family was declined the opportunity of pre-implantation genetic diagnosis by the HFEA. Charlie, a three year old, suffered from Diamond Blackfan Anaemia, a disease resulting in an extremely low production of red blood cells. The condition requires continuous use of life saving drugs and therapy – it has no cure but is aided by bone marrow transplant. The creation of a “saviour sibling” would have given Charlie a 90% chance of recovery. The most important difference between this case and others is that the blood disorder was not inherited; Charlie was a sufferer purely by chance.
It is this difference that makes it harder to see if the creation of a “saviour sibling” is humane and proper. With Zain, PGD ensured that the created sibling would not suffer from the disease, which he had a one in four chance of inheriting via natural conception. The procedure aided both the siblings. With Charlie, the created sibling had no more chance of getting the blood disease than any other baby conceived naturally; the procedure would not aid him, but his sibling. Does this make a difference? Can parents create a child specifically designed to cure the ailment of one of their offspring when there is no benefit to the created child? The philosopher Kant said; “Never use people as a means but always treat them as an end”. If there is no benefit at all to the created child it appears hard to justify that it is humane and proper to use him to save the life of a sibling.
However, there is a flaw in the use of Kant’s argument in the context of “saviour siblings”. Although the created sibling might not be aided physically by the procedure he is being given a life and in most cases a loving family who claim they want the new sibling as a way of saving their other child’s life and as adding a new member to their family. If the child is to live a reasonably normal life then perhaps he is not being used solely as a means, he is in fact benefiting from the procedure meaning that it could be classed as fully humane, to both siblings.
Those against the use of “saviour siblings” have raised the issue of the possibility of psychological trauma that the created sibling may suffer from knowing that he was created partly for reasons of imposed altruism. It is of course difficult to prove this because there are few “saviour siblings”. The child could feel as if he had been used or in contrast the child may have a sense of fulfilment and moral purpose.
Furthermore there is an issue of escalation. A surprisingly large number of people fear that if we start using “saviour siblings” the situation may escalate to creating banks of donors for spare body parts. Although this seems somewhat abstract it is not unusual for perceptions to change and technology to be used in unforeseen ways. In addition, the fact the procedure costs a large amount of money may mean that private doctors suggest and use it more frequently in order to increase income, even when it is not particularly suitable.
Finally it is important to address the ethical and religious objections to the use of “saviour siblings”. Some religious groups believe that “personhood” starts at conception and hence the destruction of embryos is murder, even if it is murder for a good cause.
In conclusion we can see that the issue of “saviour siblings” is debated. Since the introduction of the HFEA’s policy, nine licences have been granted and they receive, on average, three applications per year. I believe the fact the issue is so hotly debated and that a supply of applications is present means there is an even greater need to treat every case individually. The complex situation cannot be solved through religious, moral or ethical absolution. The amount of good that will or may be done can be weighed against the amount of harm ad suffering that will or may result; then we can attempt to see whether it would be humane or proper.