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Ethical issues surrounding the creation of designer babies

Caroline McIlwaine, 3rd Year Medical Student, QUB

Address for Correspondence: School of Medicine and Dentistry, QUB, Whitla Medical Building, 97 Lisburn Road, Belfast BT9 7BL Email:

It this article, the ethical issues surrounding the case of Jamie Whitaker are discussed1. Jamie was genetically selected to be a near perfectly matched blood stem cell donor for his brother Charlie who suffers from Diamond-Blackfan Anemia. J NI Ethics Forum 2006, 3: 75-84 Medical Background Diamond-Blackfan Anaemia (DBA) or congenital pure red cell aplasia2 is a rare hypoplastic anaemia which using presents with severe pallor, mild hepatomegaly, macrocytic or normocytic anaemia with reticulocytopenia and marked erythroid hypoplasia3. There may be other signs such as splenomegaly. The presentation of DBA does vary dramatically even within families, as does the responsiveness of the individual to treatment and the presence of congenital anomalies4. The inheritance of DBA is usually autosomal recessive5, however dominant forms are also encountered6; the outcome of the disease is not affected by these different modes of inheritance. Treatment Options Before treatment was available for DBA, all sufferers died within a year from their inability to produce red blood cells1. There is currently a fairly wide range of treatments available for this condition, however, and expected survival has extended dramatically. The first treatment that was used successfully for DBA was repeated blood transfusions1, and this practice is still the mainstay of treatment today for steroid resistant disease6. Corticosteroids are first-line treatment for DBA; prednisolone is the drug of choice6. Up to 50% of patients will not benefit from treatment because they do not respond at all, they only respond to high doses which carry risk of adverse effects or because their treatment will subsequently fail. There is a very wide range of response to steroids, from rapid response followed by steroid-independent remission through response followed by steroid dependence to no response. Some other therapies have been attempted, with differing success, including Danazol (attenuated androgen) treatment with limited effectiveness7 and 6-mercaptopurine with some positive response8. Cyclophosphamide and antilymphocyte globulin treatment9, vinvristine, erythropoietin10 and iv methylprednisolone11 have also been attempted with varying results. Haemopoietic stem cell transplantation is also a possibility for those who do not respond to steroid treatment. For some patients who are unresponsive to steroid therapy, this is the only treatment where cure is possible6. Survival rates for this procedure are variable, depending on the degree of HLA-matching with the donor and the recipient; a wide variety of figures are quoted in various sources: from 88% survival in HLA-matched sibling donors compared to 28% with alternative donors6, to 87.5% survival in HLA matched sibling donors compared to 14.1% in alternative donors12.

Ethical Issues For the Parents: The illness suffered by a child must be incredibly distressing for the parents; as one mother of a six year old son with Duchenne Muscular Dystrophy said: `It is so unnatural to think that your child is going to die and you are going to have to watch him die and be unable to do anything' 13. The thought that there is a possibility for cure which is not taken advantage of is surely not upholding the principle of non-maleficence to that child. Baroness Warnock addressed the House of Lords in these words "I am neither a doctor nor a scientist, but I believe that to refuse to help those who might be helped is contrary to both religion and humanity' 14. Those who do not accept this principle assert that parents are becoming consumerist towards their children, and that children are gifts, not commodities15. Children are unique people with their own dignity and status and each should be valued for themselves, not for the fact that they may be able to save the life of another 16, 17. Of course, children who are chosen for this particular purpose will not necessarily be thought of in a different way to those born naturally, and will, most likely, be valued both for themselves and in a very special way as they may save the life of another. For the affected child: for the child who suffers from the disease, in this case Charlie Whitaker, the possibility of cure for a life limiting condition is surely too good an opportunity to be rejected, applying the principle of beneficence. As most of the children will be incompetent due to their age, the decision that they would most likely make for themselves must be made by another. The parents would then have to decide on what is best for their child, and as has already been discussed, it is nearly impossible for a parent to decide not to try to save the life of one of their children. For the Designer Baby: as has already been discussed, the argument that the baby will not be wanted for themselves is not watertight; the love that parents have for a child is not conditional on whether or not they were born naturally or whether or not they were genetically selected. Indeed, a very special bond may exist in such cases as these. The designer baby will enable the medical professionals to uphold the principle of beneficence to the affected child, as well as being seen as a very special person in their own right. Justice and cost: the cost of IVF and other `reprogenetic' medical treatments must also be considered. In an already overstretched NHS, is there justification for spending thousands on one child, when the money could be used to benefit a larger number of people? Around 75% of people undergoing IVF pay for most of their own treatment18. Under some health boards, however, infertile couples are now offered two free IVF cycles. The moral status of the embryo In my opinion, this discussion is based around the place that is given to the embryo in ethical debates. Is the two-cell stage following fertilisation granted the same status as the implanted early embryo, the 22 week foetus and the term baby? Opinions on this subject differ widely; the legal position is that up to 14 days after fertilisation, the embryo is not a `person' and research may be carried out to try to investigate problems such as genetic disorders and miscarrage19. This 14 day embargo is in place because of the primitive streak that appears at around 15 days; the neural tissue that hallmarks the embryo individually and makes the embryo unique.

On the other hand, there are those who disagree with this point of view, both that the embargo is too early and that it is too late. Firstly, those who believe that life or personhood begins before 14 days; they belong to the `conception school'. This group of people hold the view that life begins at conception, the moment an ovum is fertilised19. Many Christians and members of other world faiths are of this opinion, however even within Christian circles, there is variation in interpretation of the Bible; some say it is clearly stated that life begins at conception: `The word of the Lord came to me saying, "before you were in the womb I knew you, before you were born, I set you apart"20. This passage may be interpreted to mean that God chose each person even before the moment of implantation, however some are less certain. The Archbishop of York cited the Anglican Board of Social Responsibility in these words:...'it is consistent with Anglican tradition that a fertilised ovum should be treated with respect but that its life is not so sacrosanct that it should be accorded the same status as a human being.21 There is one major difficulty I feel with holding the view of life beginning at conception. In my opinion, the number of fertilised ova that are lost before implantation argue against this point of view, otherwise, how could God let so many `people' cease to exist for no apparent reason? The Bible passage already quoted refers to Jeremiah being chosen before he was in the `womb'; other portions of Scripture make mention of the part God plays in the intrauterine environment, but not before: `For you created my inmost being, You knit me together in my mother's womb'22. This argument for life beginning at implantation is an opinion shared by many of various faiths. The `gradualist school' of thought does not define a certain moment for the beginning of life, but many differing opinions exist within this group. As mentioned previously, some believe that life begins at implantation, some at 15 days when the `primitive streak' appears, some at 22 weeks beyond which foetuses have survived outside the womb, and some not until birth.23 These latter two opinions would permit experimentation beyond where the legal limit permits. Some leading philosophers would argue that a person must have capacity for enjoyable experiences, for interacting with others and for having preferences about continued life24, or someone who is capable of valuing their own life25. These philosophical points of view obviously do not accept that an embryo, or indeed a foetus, can be a person. For those who believe that personhood only comes with self-valuation, experimentation on embryos and the selection of the right genetic make-up is a perfectly ethical procedure, for those embryos that are discarded are not `people' so there is no moral wrong. However, this raises serious issues about other human beings who may by this definition, not be `people': newborn babies and infants who lack self awareness, children and adults with congenital brain abnormalities, severe brain injury, dementia and some psychiatric illnesses.26 Consequences of Selection As well as the ethical debate that surrounds the issue of embryo experimentation and selection, the consequences of allowing the selection of designer babies must also be examined. Some would feel that more research might be the way to examine the myths that surround the issue of designer babies so they can be answered27. However, it is my opinion that ethical objections that stand in the way of designer babies will not be removed. The benefits of selection are clear in some cases. The Whitaker family will obviously see great benefit of selection saving the life of a child. James Watson, who shared the Nobel Prize for the discovery of the structure of DNA in 1953, suggested that the benefits and indeed the right of the parents' autonomy will far outweigh any fears over the issue and that `the potential benefits

of controlling the ultimate engine of human evolution far outweigh the risks28. But are we controlling human evolution or is this merely a `trivial means of throwing away an embryo'? 17. It has been said that `hard cases make bad laws' and I think that to pass a law following a case such as the Whitakers' would ultimately be disastrous. The moral decision seems clear in a case like this, but if a law is passed, the risk is that it will be used for increasingly trivial reasons.1 Indeed, something of what might happen can be seen following the Abortion Act of 1967- hard cases passed the Act, and abortions are now almost commonplace. Sex selection has also been passed for the prevention of sex-linked genetic disorders such as haemophilia, however, as yet sex selection for `social' reasons such as preference or family balancing has not been passed29. The Human Fertilisation and Embryology Authority's (HEFA) decision has been based on public opinion, however, not on ethical principles15 and thus is open to debate or even change in the future. This may well lead to non-medical sex-selection being normal practice and designer babies will probably not be far behind. Conclusion The creation of designer babies is, I believe, easy to justify in some cases such as that of the Whitakers', but in order to create that one designer baby, the number of embryos that are discarded does not justify the saving of one life. Of course, I am not in the position to have to watch my child die if a related sibling is not created for transplantation and cannot comment on the tragic decision that must be made by parents to refuse this option. `We are losing the concept that life is given to us by a higher force and it is not ours to demand or to manipulate. 17 I am firmly convinced that the core of this debate is centred on the status that we give to the human embryo. There is much difference of opinion surrounding this issue, as has already been stated. I am a member of the `conception' school of thought, we cannot create life, but only manipulate what has been given to us already. We are told in Genesis that `God breathed into his nostrils the breath of life and man became a living soul' 30. It is God who gives us life and children are a gift from Him, and not subject to our preferences.

Caroline undertook the 2nd Year Student Selected Component `Reproductive Technology" co-ordinated by Professor Sheena Lewis, School of Medicine and Dentistry, in spring 2005.

References [1]. Saunders P. Designer babies. Triple Helix Summer 2003 [2]. Wynn RF, Grainger JD, Carr TF, Eden OB, Stevens RF, Will AM. Failure of allogeneic bone marrow transplantation to correct Diamond-Blackfan anaemia despite haemopoietic stem cell engraftment. Bone Marrow Transplant 1999; 24 (7): 803-5 [3]. Manglani M, Lokeshwar MR, Sharma R. Diamond-Blackfan anemia: report of 6 cases. Indian Pediatr 2003; 40 (4): 355-8 [4]. Vlachos A, Klein GW, Lipton JM. The Diamond Blackfan Anemia Registry: tool for investigating the epidemiology and biology of Diamond-Blackfan anemia. [5]. Bourhama MH, Al-Matter ER, Aboobacker KC, Al-Humood S. Familial Diamond-Blackfan anemia. Case reports and a review of the related literature. J Trop Pediatr 2004; 50 (1): 54-6

[6]. Alter BP. Inherited bone marrow failure syndromes. In: Nathan DG, Orkin SH, Ginsburg D, Look AT, eds. Haematology of Infancy and Childhood (6th edition). Pennysylvania: WB Saunders Co, 2003 [7]. Willig TN, Gazda H, Sieff CA. Diamond-Blackfan anemia. Curr Opin Hematol 2000; 7(2): 85-94 [8]. Firkin FC, Maher D. Cytotoxic immunosuppressive drug treatment strategy in pure red cell aplasia. Eur J Haematol 1988; 41(3): 212-7 [9]. Bonno M, Azuma E, Nakano T, Higashikawa M, Kawaski H, Nishihara H, Obata M, Umemoto M, Sakatoku H, Komada Y, Ito M, Nagai M, Sakurai M. Successful hematopoietic reconstitution by transplantation of umbilical cord blood cells in a transfusion-dependent child with Diamond-Blackfan anemia. Bone Marrow Transplant 1997; 19(1): 83-5 [10]. Freedman MH. Erythropoiesis in Diamond-Blackfan anemia and the role of interleukin 3 and steel factor. Stem Cells 1993; 11 Suppl 2: 98-104 [11]. Buchanan GR; International Diamond-Blackfan Anemia Study Group. Oral megadose methylprednisolone therapy for refractory Diamond-Blackfan anemia. J Pediatr Hematol Oncol 2001; 23(6): 353-6 [12]. Vlachos A, Federman N, Reyes-Haley C, Abramson J, Lipton JM. Hematopoietic stem cell transplantation for Diamond-Blackfan anemia: a report from the Diamond Blackfan Anemia Registry. Bone Marrow Transplant 2001; 27 (4): 381-6 [13]. Thames Television. An Acceptable Price. 1990 In: Davies L. Brave new world? Mod Midwife March 1994: 18-20 [14]. Warnock Baroness M. Hansard (HL 7 December 1989) London: HMSO In: Davies L. Brave new world? Mod Midwife March 1994: 18-20 [15]. Saunders P. HFEA ban on sex selection. Triple Helix Winter 2004 [16]. Campbell AV. Reproductive medicine: the ethical issues in the twenty-first century. Hum Fertil (Camb) 2002; 5 (Suppl 1): S33-6 [17]. McGhie TK. Designer babies. West Indian Med J 2003; 52 (2): 170-4 [18]. Levitt M. `Not so wrong that we are prepared to threaten the entire service': 5the regulation of reproductive technologies in the UK. Hum Reprod Genet Ethics 2001; 7 (2): 45-51 [19]. Davies L. Brave new world? Mod Midwife March 1994: 18-20 [20] Jeremiah 1v 4-5 [21]. Archbishop of York. Hansard (HL 7 December 1989). London: HMSO In: Davies L. Brave new world? Mod Midwife March 1994: 18-20 [22]. Psalm 139v 13 [23]. Lewis S. Designer babies. Lecture 23 March 2004 [24]. Singer P. Rethinking Life and Death. Oxford: OUP, 1995 [25]. Harris J. Quoted in: Wyatt J. What is a person? Nucleus January 2004 [26]. Wyatt J. What is a person? Nucleus January 2004 [27]. McMahon CA. Community concerns about sex selection: research as a way forwardresponse to Edgar Dahl's `The presumption in favour of liberty'. Reprod Biomed Online 2004; 8 (3): 272-4

[28]. TWJ Headline News. DNA pioneer wants to rid society of genetic defects.; 2001 In: McGhie TK. Designer babies. West Indian Med J 2003; 52 (2): 170-4 [29]. Engel J. Sex selection. Nucleus January 2003 [30]. Genesis 2v 7


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