A life may be saved but serious ethical questions are raised

A life probably has been saved, but was the ethical price too high? A test-tube baby was conceived and delivered in the US to…

A life probably has been saved, but was the ethical price too high? A test-tube baby was conceived and delivered in the US to provide transplanted cells for an ill sibling, but the procedure has raised profound ethical questions.

The baby boy, Adam Nash, was born on August 29th to parents Lisa and Jack Nash of Englewood, Colorado. He started life as one of about a dozen embryos created to provide donor transplant cells for his sister Molly, who suffers from an inherited and life-threatening bone-marrow deficiency called Franconi Anaemia.

So many embryos were needed because they were first screened using "pre-implantation genetic diagnosis" to ensure the embryo chosen for life did not carry the disease. Once selected as healthy and a suitable donor, the embryo that became Adam Nash was implanted in his mother's womb and brought to full term.

The cells provided by Adam were harvested from his umbilical cord and were given to Molly on September 26th. It will be another week before doctors treating her know for sure whether the transplant was successful, but they are very optimistic.


Molly's long-term prognosis was not good, according to Dr Charles Strom, director of medical genetics at Illinois Masonic Medical Center, where the genetic testing was done. Now she had an 85 to 90 per cent chance of overcoming the disease.

Clearly it would be wonderful if Adam managed to make his sister well again, but the decision to carry out the procedure will have crossed many ethical boundaries. The parents had stated their desire to have another child but were fearful of having one with the disease. But was the decision a means to an end or a genuine attempt to have another child?

The question is a key issue, according to Prof Peter Whittaker, head of the Department of Biology at NUI Maynooth. For the past three years Prof Whittaker has been an Irish member of the European Group for Ethics in Science and the New Technologies, which advises the Commission and the EU Parliament. He is also a bioethics committee member of the International Union of Biological Sciences.

"From a general ethical point of view an ethicist would have a problem with the instrumentalisation of an individual," he stated. "If there was no intention to have more children, then the child is instrumentalised. If you set out purely to have a child which did not suffer from the disease in order to cure the other child then you have a problem."

This, he said, was the beginning of a very dangerous process. "This is the thin end of the wedge towards designer babies. Where do you stop?" Rather than screening for disease, it might be possible to screen for sex, size or hair colour.

It was not clear, however, that this was the intention. "I would say that as long as you are going to produce a child that is healthy and loved it is a good thing if that child can also help his sister. Many ethicists would not agree with that standpoint. It is a fine line, really, as to how you define a value."

Asim Sheikh, a lecturer on legal medicine at University College Dublin and a practising barrister, agreed the real question was the parents' intent and whether they wanted a child or "the creation of an individual for the purposes of the use of a product".

In law there was the "ethical doctrine of double effect", in this case two goods coming from the procedure, the birth of Adam and the donor cells for Molly. The legal situation was not clearly defined here, however, he added. "There is no legislation to guide us."

It would be against established ethical guidelines in Ireland for a doctor to pursue the treatments provided for the Nash family. Doctors infringing these guidelines would be at risk of professional misconduct, according to the Irish Medical Council.

The council has laid down rules on assisted human reproduction (AHR) in its Guide to Ethical Conduct and Behaviour. Destructive embryo research is prohibited and embryos cannot be produced for research purposes. "In an Irish context it would be a difficult thing because of the question of using embryos for diagnosis," Prof Whittaker said.

The guide also specifically requires that "any fertilised ovum must be used for normal implantation and must not be deliberately destroyed". This means that if the Nash family had received treatment here, all of the embryos would have been implanted, regardless of whether they carried the disease.

The opportunity to screen for a genetic disease applying the advanced techniques used in Adam's case would not have arisen here because they are not available. Ireland offers only limited genetic counselling for prospective parents concerned about inherited diseases.

There is no confusion over the Catholic Church's position on how Adam Nash was conceived and screened. It would take issue with the initial in vitro fertilisation technique and with the subsequent selection and discarding of unwanted embryos, explained Father Kevin Doran, secretary of the Bishops' Committee on Bioethics.

Within the past 10 days the Bishops' Committee published a report, Assisted Human Reproduction, Facts and Ethical Issues, in which it provides its ethical view on human embryo research and AHR.

It does not condemn those who might use any of the technologies, but points out that technological interventions "do not sit well with the dignity of the human person". Problems occurred when the use of technology became the dominant feature, the guide states. "Is the intrusiveness of technology too high a price to pay?"

Yet the price was paid and Adam was the result. He brought with him the possibility that Molly might overcome her disease and in time enjoy a normal life. The wonder of their existence in itself is a compelling ethical argument.