Life and death decisions

In August 2002, the UK Human Fertilisation and Embryology Authority (HFEA) rejected an application from Michelle and Jayson Whitaker to use an in vitro fertilisation (IVF) ’tissue type’ technique, which would have allowed them to have a child who would be a genetic match for their son Charlie.

Three-year-old Charlie suffers from a rare blood disorder, diamond blackfan anaemia, for which he has to undergo painful day-long blood transfusions and daily injections. A brother or sister with the same tissue type as Charlie could donate the cells that could cure him.

Yet in December 2001, the HFEA gave the go-ahead for Raj and Shahana Hashmi to use IVF to produce a child who would be a tissue match for their son Zain, who suffers from the blood disorder beta thalassemia.

These two cases look the same. Both sets of parents had a chronically ill child, who could die without treatment from a donor; both wanted to have a second child who could provide donor cells. Both sets of parents came across as normal, loving parents, who wanted the best for their families.

How could the HFEA allow one and reject the other?

In a press release dated 1 August 2002, the HFEA’s chief executive defended the decision to reject the Whitakers’ application on the basis that it ‘does not meet the carefully considered criteria laid down to ensure that the procedure is lawful and ethical’ (1).

According to these criteria, laid down around the time of the Hashmi case in late 2001, pre-implantation genetic diagnosis (PGD) can only be used in cases where the embryo being selected was itself at risk of inheriting the genetic disorder: the Hashmis’ was, the Whitakers’ wasn’t.

The HFEA also said that its decision was in accordance with public opinion, which approved of PGD to avoid inherited genetic disorders, but not for other reasons. The HFEA press release cited the ‘results of a public consultation on the acceptability of PGD’ (2).

While the HFEA claims that its criteria for the use of PGD are based on careful ethical reasoning and researched public opinion, they actually rest on more shaky foundations. The Whitaker decision also suggests a suspicion of parents’ motives, and a reluctance to allow parents to decide what is best for their children.

Pre-implantation genetic diagnosis (PGD), the technique the Whitakers wanted to use, involves the removal of one or two cells from an in vitro embryo about three days after fertilisation, before choosing which embryo to implant in the womb. The DNA from this cell can then be tested for a series of genetic disorders. At the same time, it can also be tested for tissue type.

The stem cells that could be used to save the lives of Charlie and Zain could be taken from the umbilical cord blood of the baby – a procedure that has no deleterious effect upon the welfare of the fetus. In some cases, it might be necessary to take the donor cells from the child’s bone marrow – this is a more invasive procedure, which is protected by a separate set of regulations.

The HFEA claimed that its decision in the Whitaker case was based on ‘ethical’ criteria. But the Whitaker decision sparked much controversy and discussion among the media, the medical profession and ethicists.

John Harris, professor of bioethics at the University of Manchester, said: ‘My view is that the decision is unethical. It may cost the life of a child. It is seriously morally wrong and very sad…. Whenever we can make things different, we have responsibility for the outcome. If that child dies, it would not have died a natural death – it would have died because of the decision of the HFEA, and the death will be their responsibility.’

Dr Mohammed Taranissi from the Assisted Reproduction and Gynaecology Centre in London told me that, ‘if anything is to do with helping cure an illness or a disease, I don’t have an ethical problem with it’.

More to the point, the HFEA’s decision went against the recommendation of its own ethics committee.

The use of PGD to produce tissue donors was considered in detail by an HFEA ethics committee, a sub-group of the authority, and this committee decided that tissue-typing should be allowed in cases where a sibling is suffering from a life-threatening condition – even if, as in the case of Charlie Whitaker, the condition is not inheritable. The report produced by the committee, published on 22 November 2001, had been available from the HFEA’s website (3). It has since been removed.

In many cases the committee’s report provides a series of arguments against the HFEA’s justifications for its decision.

The HFEA’s 1 August press release in response to the Whitaker case said that the restriction of PGD for tissue typing was ‘consistent with the terms of the Human Fertilisation and Embryology [HFE] Act (1990)’ (4). One part of this Act states that all treatments must be in the welfare of the child. The minutes for a HFEA meeting on 29 November 2001 (which are available from its website), where the authority decided upon the criteria for PGD, note that: ‘Members felt that to allow PGD for tissue typing alone would run contrary to the requirements of the welfare of the child assessment.’ (5)

But the HFE Act’s statement on the welfare of the child reads: ‘A woman shall not be provided with treatment services unless account has been taken of the welfare of any child who may be born as a result of the treatment…and of any other child who may be affected by the birth.’ (6)

In its report, the HFEA ethics committee gave a number of cases in which the use of PGD for tissue typing could be seen as being in the welfare of the child. It notes that ‘it is certainly possible that it is in the interest of the putative child to be able [to] save the life of its sibling…thereby saving its family from the turmoil of bereavement, preserving companion siblings, etc’ (7). A child is born into a family environment, and it is in its ‘interests’ that the family environment is as happy as possible.

The minutes for the HFEA’s 29 November meeting that decided against the use of PGD for tissue typing alone note that: ‘concerns were expressed about the psychological burden that may be placed on a child who was an “engineered” match as [opposed] to a “natural” match.’ (8)

But why should this knowledge cause a psychological burden? On the contrary, it could make a child feel special to know that he was chosen to save the life of his brother or sister. Far from setting the second child against the first, the use of PGD for tissue typing could actually help cement the bonds between family members.

Also, the ‘welfare of the child’ clause allows for consideration of the welfare of ‘any other child who may be affected by the birth’ – a clause that would clearly apply in the case of Charlie Whitaker.

The ethics committee also noted that just because parents have a second child who could act as a donor to a first child, this does not mean that they will view the second child instrumentally, as little more than a useful source of stem cells: ‘the Committee agrees that the element of utility in the parents’ decision to conceive clearly does not rule out their benevolent intention to love and care for the child.’ It also noted that ’tissue donation is not in itself a problematic reason for having children and is certainly no worse than other common reasons’ (9).

The HFEA’s 1 August press release in response to the Whitaker case also cited a section of the HFE Act, which states that a license may only be granted for ‘practices designed to secure that embryos are in a suitable condition to be placed in a woman or to determine whether embryos are suitable for that purpose’ (10).

But this law could potentially be interpreted liberally or conservatively. What exactly does it mean to say that the embryo should be in a ‘suitable condition to be placed in a woman’? It could mean ‘suitable’ from the embryo’s point of view, in order that the embryo develops and is born as a normal and healthy child. The abstract embryo, from the strict point of view of its own welfare, doesn’t mind what tissue type it is – although it would want to be born free of genetic disorders.

However, ‘suitable’ could also be seen from the point of view of the family into which the second child is being born. For the parents and for the chronically ill child, tissue type is very important in deciding upon the suitability of the embryo to be implanted.

John Harris puts this issue of selecting embryos into some context. ‘In IVF, mothers have more embryos than they may implant legally, or indeed ethically. A woman has 6, 10 or 12 embryos; but they only implant three. Surely it is better to choose on the basis of rational or humanitarian reasons, rather than for non-rational reasons? No embryo has an entitlement to be implanted.’

The recommendations of the ethics committee’s paper were rejected by the HFEA in its 29 November meeting. According to the HFEA, full meetings of the authority rarely last for more than half a day; and, according to the minutes for 29 November, this meeting involved many other items. The minutes state that ‘members noted the contents of this [ethics committee] paper’, but went on to note a series of concerns (including the ‘psychological burden’ and ‘welfare of the child’ arguments) before concluding that ‘it was agreed that tissue typing using PGD should only be offered where PGD was already necessary to avoid the passing on of a serious genetic disorder’ (11).

Yet when she announced this decision on 13 December 2001, then HFEA chair Ruth Deech said, ‘We have considered the ethical, medical and technical implications of this treatment very carefully indeed‘ (italics added) (12).

The ethics committee seemed to work on the assumption that people have a right to make the decisions that affect their family, and that the state should only interfere as a final measure. ‘There is a presumption in law that people should be free to exercise their rights in areas of activity that most closely affect themselves and their families’, the ethics committee stated in its paper. Given that it is technically possible to select an embryo with certain genetic characteristics, the commission said that the issue to decide was whether it would be ‘morally justifiable for the state to withhold this choice’ (13).

By contrast, the HFEA’s decision not to allow PGD for tissue typing alone seems to involve the opposite assumption. The onus is on the parents to prove why they have the moral right to have the choice – not on the state to prove its moral right to withhold the choice. So HFEA chair Ruth Deech’s 13 December statement said that PGD for tissue typing would only be used ‘in very rare circumstances and under strict controls’ (14).

The ethics committee also seemed to work on the basis that reproductive morality and ethics involves families, not individuals with narrowly opposed interests. If you have in mind a fetus with no interests other than to want to be born healthily, and parents with no interest other than to want a source of stem cells, then allowing PGD for tissue-typing would seem most unethical. It would indeed make the second child a ‘means to an end, not an end in itself’.

But the HFEA’s judgement that PGD for tissue typing would go against the ‘welfare of the child’ suggests instrumental and selfish relationships between family members. Here, there seems to be an idea that the fetus needs protecting from the manipulations of its parents.

Furthermore, the HFEA’s suggestion that its decision was based on the rock of public opinion is not backed up an examination of its public consultation. In one question, respondents were asked whether they agreed with the current practice that PGD should be licensed ‘for a limited number of specific serious inherited conditions’, and they were given the options: ‘Yes’, ‘No – greater restriction needed’, or ‘No – less restriction needed’ (15). Seventy-four percent said ‘yes’, 20 percent said greater restriction, and eight percent said less restriction.

The consultation did not explicitly ask respondents what they thought about using PGD for tissue typing – and it certainly didn’t illustrate this question by using a case like the Whitakers’, which would have helped bring the issue to life.

The HFEA doesn’t really know what the public thinks about the issue. If anything, it is more likely that its decision to limit the use of PGD for tissue-typing was influenced by what it thinks the public thinks. Perhaps the authority decided to plump for the more restrictive regulation because it was nervous about sparking off fears about ‘designer babies’.

After the Whitaker decision, however, the tabloid press jumped the other way, expressing outrage that this family was being denied access to a technique that could save Charlie’s life. ‘The sick little boy science won’t save’, read the frontpage headline in the Daily Mail on 2 August 2002.

The outcome of the HFEA’s criteria for restricting PGD is a mess. ‘They have made two decisions that are exactly the opposite of each other. This reflects the fact that they don’t really know what to do’, Dr Mohammed Taranissi told me. ‘They are sitting on the fence, picking and choosing.’

This decision to limit PGD for tissue typing should not go unchallenged. We have the technology available to save children’s lives, yet doctors are not able to use it. ‘What we are talking about here is a life-threatening situation’, says Taranissi. ‘All that we are trying to do is cure an illness. If somebody has a problem with this then they have a problem with medicine itself.’

But even if the HFEA had based its decision on well-researched public opinion polls and the deliberations of ethics committees, it still would have been the wrong one. It is couples who should decide when and how they want to have children – and it is they who are best placed to decide what is in the best interests of their family.

As the HFEA’s ethics committee said in its report, ‘There is a presumption in law that people should be free to exercise their rights in areas of activity that most closely affect themselves and their families’.

This is an important presumption, for any society that values freedom. But by extension, perhaps this argument calls into question the existence of the HFEA itself – at least in its present form – as a body that regulates and restricts the fertility treatment that individuals and couples are able to use.

The HFEA is pleased to receive comments or queries about its work (email admin@hfea.gov.uk)

Read on:

‘People have all kinds of fertility needs’, by Tessa Mayes

Storm in a test-tube, by Barbara Hewson

Making babies, by Tessa Mayes

The sex selection question, by Piers Benn

spiked-issue: Genetics

(1) HFEA press release, 1 August 2002. Available from the HFEA website

(2) HFEA press release, 1 August 2002. Available from the HFEA website

(3) ‘Ethical issues in the creation and selection of preimplantation embryos to produce tissue donors’, Opinion of the Ethics Committee of the Human Fertilisation and Embryology Authority, 22 November 2001

(4) HFEA press release, 1 August 2002. Available from the HFEA website

(5) See the minutes for the HFEA’s 29 November meeting

(6) See the Human Fertilisation and Embryology Act 1990

(7) ‘Ethical issues in the creation and selection of preimplantation embryos to produce tissue donors’, Opinion of the Ethics Committee of the Human Fertilisation and Embryology Authority, 22 November 2001

(8) See the minutes for the HFEA’s 29 November meeting

(9) ‘Ethical issues in the creation and selection of preimplantation embryos to produce tissue donors’, Opinion of the Ethics Committee of the Human Fertilisation and Embryology Authority, 22 November 2001

(10) HFEA press release, 1 August 2002. Available from the HFEA website

(11) See the minutes for the HFEA’s 29 November meeting

(12) HFEA press release, 13 December 2001

(13) ‘Ethical issues in the creation and selection of preimplantation embryos to produce tissue donors’, Opinion of the Ethics Committee of the Human Fertilisation and Embryology Authority, 22 November 2001

(14) HFEA press release, 13 December 2001

(15) See the Outcome of the Public Consultation on Preimplantation Genetic Diagnosis (.pdf)