Nuruldina Alia Samdin

200311525

Creation of Saviour Siblings and Its Implications on Welfare of Children

1.0 Introduction

‘Saviour Sibling’ is defined as “a child created through genetic screening at least partially
due to parents’ desire to obtain innate characteristics that can provide treatment to a child suffering
from a fatal disease”1. The purpose of a saviour sibling is usually for the sake of saving an existing
child. Commonly, they are needed for cord blood stem cells or bone marrow transplant. Prior to
fertilisation, a finding process would be implemented to ensure healthy and perfectly matched
sperm and ova from the parents for use in in-vitro fertilisation (IVF). The resulting embryos would
then be screened by using pre-implantation genetic diagnosis (PGD) to exclude any genetic diseases
such as beta thalassaemia2. To make this process a success, Human Leucocyte Antigen (HLA)
typing (“tissue typing”) is used not only to ensure the embryo is free from any genetic diseases but
also a ‘perfect match’ for the existing child. Only then are created embryos implanted in the
mother’s womb to become saviour siblings3.

The creation of a saviour child, or so called ‘designer baby’, created a phenomenon, and
mixed reactions could be seen from the public including professional healthcare practitioners.
Numerous questions, opinions and reactions regarding this matter have been portrayed by the
general public. Amongst the questions raised, one crucial question remains unanswered; to what
extent do the individual or groups’ opinions justify permitting the creation of saviour siblings? To
untangle and answer the question; the issues surrounding the creation of saviour siblings will be
discussed in this essay. The focus will be on parental autonomy, wrongful instrumentalisation, and
slippery slope arguments. Under the slippery slope argument, the Human Fertilisation and
Embryology Authority will be discussed in brief. Finally, this essay will deliberate the implication
of child welfare; the physiological and the psychological aspects of saviour siblings.

2.0 Ethical concerns about Creation of Saviour Siblings

2.1 Parental autonomy

“...the only purpose for which power can be rightfully exercised over any member of a civilised
community, against his will, is to prevent harm to others. The only part of the conduct of any one,
of which he is amenable to society, is that which concerns others. In the part which merely
concerns himself, his independence is, of right, absolute. Over himself, over his own body and
mind, the individual is sovereign2.”- John Stuart Mill

Parents have a responsibility to protect their own children. However, the issue is whether or
not the parental autonomy in protecting welfare of their children is the most superior and cannot be
challenged by any law in the entire universe. The quotation from Mill clearly stated that autonomy
should be respected. But, in certain circumstances, it can be overridden to prevent harm to others.
The question would be; how far does this autonomy extend? Does the creation of saviour siblings
really help parents to fulfil their responsibility? On the one hand, they are doing something to save
1
Nuruldina Alia Samdin
200311525

the life of the existing child, but on the other hand, they are killing their potential child. Since
killing is against medical ethical value of non-maleficence, this action could clearly be considered
as harming the saviour sibling. Therefore, it is unjust and morally unacceptable to save someone by
sacrificing another.
In contrast, taking a utilitarian approach, the consequences are more important than the
4
actions . Creation of saviour siblings may produce harm but the benefits outweigh the risks. Firstly,
parents are able to save the life of their existing child, thus fulfilling their responsibility as parents.
Secondly, killing embryos with abnormalities or diseases will prevent additional psychological
effects for the parents as some parents would not be able to withstand the additional issues. Thirdly,
the creation of saviour siblings will help both parents and the existing child to end their suffering
due to the illness. In this case, saving the life of a human is more important than saving the life of a
potential human being. So, these arguments are strong enough to allow parents to practice their
autonomy in deciding what is the best for them and their children.

In my opinion, creating a saviour sibling would be a wise decision as finding a tissue match
donor for the existing child would be very difficult. In most cases, the existing children have fatal
diseases and parents are in emergency situations to save them. In this difficult situation, the decision
to create a saviour sibling is justified from the parents’ perspective and they will try their very best
to prevent harm to the existing child. In this case, the non-maleficence value is applied to the
existing child, not the embryos. As stated by Glover,

"If there is a child's life at stake, you have got to have a very powerful reason to resist the
means by which that life can be saved5.”

2.2 Wrongful instrumentalisation

“Never use people as a means but always treat them as an ends6”- Immanuel Kant

This famous dictum is often used as an argument against the creation of saviour siblings for
wrongful instrumentalisation. Wrongful instrumentalisation is based on the premise that the saviour
child is brought into this world to save the existing child. They are not wanted for themselves. They
are used as a ‘tool’ for another person’s life1. This notion suits Kant’s famous dictum that forbids
using people as a means for other people’s ends. According to the ethical framework which is the
rights approach, each human has dignity. They need to be treated as ‘ends’ themselves and not
merely as other people’s ‘ends’4. Therefore, an ethical action will be the one that can respect and
protect the human dignity of the saviour child.

Kant’s dictum is actually not totally opposed to the use of people as a means, but only as
long as the people are not solely treated as a means. In reality, we do used people as a means to our
ends without realising it. For example is in blood transfusion6,7. The blood donor is used as a means
to the receiver’s ends. Even though the processes are different; the blood donor chose to give blood,
whereas the saviour siblings are chosen to save the existing child; the end result is still the same.
Both are used to save another life, or in other words they are used as a means to other people's ends.
Besides, creating a saviour child is just one of many reasons to have children. It can also be to save
marriage, provide an heir, or delight the family members 6,7. It can be said that creating a life to save

2
Nuruldina Alia Samdin
200311525

another life is a far better reason than others. According to the virtue approach, this is considered as
an ethical action because parent’s virtues, compassion and love, are consistent with their actions to
save their child and these create humanity4.

In my opinion, treating people as a means to an end is not morally wrong as long as they are
not treated solely as a means. Parents who are determined to save their child by any means,
including creating a saviour child, are undoubtedly loving and responsible parents because they
make a full effort to save their child. So, there should not be any fear that saviour siblings are
created solely for ‘instrumental’ purposes, or will be treated as a commodity by parent.

2.3 Slippery slope

It is also said that the creation of saviour siblings is a first step towards creation of ‘designer
1,6,7
babies’ . As Quintavalle said, “the new technique is a dangerous first step towards allowing
parents to use embryo testing to choose other characteristics of the baby, such as eye colour and
sex8”. Once permission is given on the creation of the saviour siblings, it is very difficult to draw a
line to control other kinds of baby selection. If we opposed the creation of ‘designer babies’, we
should have the same attitude to the creation of saviour siblings.

However, the creation of saviour siblings is morally different from ‘designer babies’.
Creation of saviour siblings is to save the life of the existing child9. Meanwhile, the creation of
‘designer babies’ are based on vague motives like desire of wanting children with specific desirable
traits2,6. Besides, we also have the Human Fertilisation Embryology Authority (HFEA) that
regulates and monitoring any system, research or treatment involving creation, keeping and use of
human embryos outside the body, or the storage or donation of human eggs and sperm infertility
treatments such as IVF10. All procedures including PGD and tissue typing are only permitted if they
are granted license from HFEA. Creation of saviour siblings is under very strict guidelines and
regulations3. The option of saviour siblings would only be granted in life-threatening conditions and
if no other treatment options are available11.

In my opinion, the slippery slope argument is not valid because creation of saviour siblings
is not inevitable. It is very unlikely to become uncontrollable or lead to bad consequences like
creation of ‘designer babies’. At present, regulatory bodies like the HFEA will ensure technologies
are being used for ethical purposes only. Even if in the future the HFEA is disbanded due to
political circumstances, this issue of human creation cannot easily slip because it involves moral
and ethical judgements that clearly involve human dignity. Therefore, the ongoing needs for
regulation will prevent any possibility of us sliding down the slope by allowing the creation of
saviour siblings.

3.0 Implications on Welfare of the Children

3.1 Physiological

Creation of saviour siblings gives rise to concerns that the saviour child will be harmed
physiologically because biopsy; an invasive procedure needed for PGD. In cases like sporadic
3
Nuruldina Alia Samdin
200311525

genetic diseases, there is no benefit in using PGD for embryo screening. The value of non-
maleficence should be applied here because the saviour child will not benefit from the invasive
procedure. However, a 1992 WHO Scientific Group report stated, “The rate of congenital
malformations in children born after IVF and embryo transfer (IVF-ET) does not exceed that
observed after natural conception11”. These results were supported by a study in 2004, which
revealed that babies born following PGD are on equal grounds with those born in natural
pregnancies to suffer defects at birth11. Besides, no further intervention is required for tissue typing
because the scientists are using the same tissue biopsy as PGD to look for a tissue match donor.
Considering the cord blood stem cells, the newborn baby is not subjected to invasive procedures to
obtain them1. After labour, both the placenta and umbilical cord have no function to the newborn
baby. Naturally, they will be thrown away along with the stem cells inside 12. Furthermore, cord
blood stem cells will never trigger an immune rejection. In cases of bone marrow transplant, this
would be a lot easier and faster to treat life-threatening conditions given a matching donor for bone
marrow is very difficult to find13.

Apart from that, there is also a concern that the saviour siblings will need to suffer
physiological harm if they are needed for further treatment later in life such as organ donation.
However, this argument is not strong enough to reject the creation of saviour siblings because until
now, the hypothetical saviour sibling has successfully helped to cure the existing child. There are
also no cases of relapse after treatment or in cases where organs are needed from saviour siblings.
One example is Charlie, who suffered with a non-genetic disorder called Diamond Blackfan
anaemia. Whitaker was prevented from creating a saviour sibling in the UK but successfully did so
in Chicago. As a result, Charlie was completely cured after receiving the cord blood stem cells from
his saviour sibling, James1,14. Another successful story of saviour siblings was from the Matthews
family. Megan, who suffered with Fanconi anaemia was saved by her saviour sibling, Max, at
Bristol Royal Hospital through a bone marrow transplant15.

In my opinion, arguments that saviour siblings will be physiologically affected are irrelevant
because the saviour siblings will not be changed physiologically by any of the procedures. There are
no significant harmful procedures involved in the creation of saviour siblings or at times of
providing treatment to the existing child. Moreover, denying the use of PGD in the creation of
saviour siblings means PGD cannot be used for other purposes as well. In this context, I definitely
think that saving a human life by creating saviour siblings is morally justified as it can ensure that
the parents’ suffering comes to an end. Also, the existing child would have a better life as the
problem they had would be resolved by the creation of the saviour sibling.

3.2 Psychological

A child born as a saviour sibling may conceivably suffer psychological effects later in life.
Firstly, they were conceived not for themselves but for the sake of others. Secondly, they may
suffer from poor relationships with their parents because they are not valued as a ‘real child’ unlike
the other children. If we look at the first argument, it assumes that the saviour sibling will encounter
difficulty when knowing they were not wanted solely for themselves1,6,7. They may feel like they are
second best in comparison to the existing child. This kind of thought would obviously affect their
development especially, emotional and mental, thus they would be more prone to psychological
4
Nuruldina Alia Samdin
200311525

problems. However, looking at the bright side, children created as saviour siblings may develop into
better people. Knowing that they are created for such a noble reason; to save another’s life, may
make them proud of themselves6. They are the ‘heroes’; the specially selected human beings created
to save other people's lives. Being the saviour sibling means they were a result of success; free from
any diseases and a tissue match donor for their brother or sister.

Meanwhile, the second argument is concerned with the relationship between the saviour
siblings and their parents. Since they were not wanted for themselves, there is a high probability
that their parents will not love them as much as other siblings6. Even if they are being loved by their
parents, the love is unnatural and it is simply because they are the ‘spare parts’. If anything were to
happen in the future, they could be used again for the sake of the existing child. Again, this kind of
thought may hinder normal child development especially in their early years because love is needed
for normal growth16. The feeling of unhappiness could also develop to a major psychological
problem such as depression17.

In contrast, there is also a high possibility that the parents will love the saviour sibling more
because they are the reason behind the existing child having a normal life and being able to
continue living like others. As stated by Taranissi, "It's not a commodity, as the baby will be loved
and cherished on its own merit. It's not just being produced as a spare part5." Not only will they be
loved by their parents, but also by the whole family especially the ‘saved’ sibling. This
unconditional love creates happiness not only for the saviour child but for the whole family as well.
Therefore, I totally disagree with the arguments against the creation of saviour siblings because we
cannot predict what will happen in the future. Happiness and sadness are not something that we can
simply presume. Even if we could, who are we to measure them? We have no right to that. As for
me, the creation of saviour siblings can definitely have a beneficial psychological impact for the
whole family member and can strengthen the family bond.

4.0 Conclusion

Creation of saviour siblings is an interesting issue because the same ethical arguments can
be used to support or reject the motion. However, based on the current situation and after going
through the above discussion, I whole-heartedly support the creation of saviour siblings and believe
that the welfare of children would be taken care of wisely. This is because creation of saviour
siblings not only saves a life, but also gives the existing child and the whole family a better and
more enjoyable life. Just imagine, how many children could be saved just by creating a saviour
sibling? Conversely, without the saviour child, the existing child may die and the whole family
would be living in bereavement. Current technology is still unable to find cures for all the diseases
in the world. In certain cases, creating a saviour sibling is the last resort and I believe this option
should be used to the fullest if other methods fail to solve the problem. Hence, we should support
parents who wanting a child free from disease, pursue a saviour sibling to cure the existing child.
The current legislation is able to protect human creation from manipulation with each case being
assessed individually. If someday in the future the scientists are able to find a cure for these fatal
diseases, saviour siblings may not be needed. Until then, we should agree to this life-saving
5
Nuruldina Alia Samdin
200311525

treatment when this is the last and only way to save a dying child.

5.0 References

1. Blyth E. 2005. Creating a life to save a life? Reflections on the conception of “Saviour
Siblings”. University of Hong Kong, 2 June.

2. Deech R, Smajdor A. 2007. From IVF to Immortality: Controversy in the era of

3. Davis A. 2005. A Research Paper: Questions and Answers on HLA testing (for saviour
siblings). No Less Human, pg.3-9

4. Markkula Center for Applied Ethics. Santa Clara University- The Jesuit University in
Silicon Valley. A Framework of Thinking Ethically [Accessed 2 December 2010]. Available
at: http://www.scu.edu/ethics/practicing/decision/framework.html

5. BBC News. Doctors plans “designer baby” clinic. 11 December 2001 [Accessed 25
November 2010]. Available from: http://news.bbc.co.uk/1/hi/health/1702854.stm

6. Sheldon S, Wilkinson S. Should selecting saviour siblings be banned? J Med Ethics

7. Freeman S. Times Online. Law Lords rule in favour of ‘saviour siblings’. 18 April 2005
[Accessed 29 November 2010]. Available at:
http://www.timesonline.co.uk/tol/news/uk/article386214.ece

8. Quintavalle J. Quoted in: BBC News. Pro-life challenge to embryo testing. 12 July 2002
[Accessed 9 December 2010]. Available at: http://news.bbc.co.uk/1/hi/health/2125482.stm

9. Spriggs M, Savulescu J. Saviour siblings, J Med Ethics 2002;28:289

10. McHale J, Fox M. 2007. 2nd edition. Health Care Law: Text and Materials. Thomson Sweet
& Maxwell

11. Dickens B.M. Preimplantation genetic diagnosis and ‘saviour siblings’. International Journal
of Gynecology and Obstetrics 2005;88:91-96

12. Elliott J. BBC News. ‘I wanted my baby’s cord blood to save’. 18 January 2010 [Accessed
20 November 2010]. Available at: http://news.bbc.co.uk/1/hi/health/8459919.stm

13. BBC News. Cord blood stem cell transplant hopes lifted. 18 October 2010 [Accessed 25
November 2010]. Available at: http://news.bbc.co.uk/1/hi/health/8462488.stm

14. Freeman M. 2006. First Do Not Harm: law, ethics and healthcare. In: S MCLEAN, ed.
Saviour Siblings. Ashgate Publishing, pg.389-406

15. Walsh F. BBC News. Saviour sibling first for Britain. 21 December 2010 [Accessed 31
6
Nuruldina Alia Samdin
200311525

December 2010]. Available at:

16. Mushtaq T, 2010. Growth and Assessment of Growth, lecture notes in Life Cycles module,
University of Leeds, 20 October.

17. Depression. NHS choices. 9 September 2010 [Accessed 2 December 2010]. Available at:
http://www.nhs.uk/Conditions/Depression/Pages/Introduction.aspx