Ethics of using preimplantation genetic diagnosis to select a stem cell donor for an existing person

The Ethics of Creating a Donor Baby – A Reply to Boyle and Savulescu

Boyle and Savulescu argue that the use of PGD to provide parents with
donor babies is ethically acceptable (1) , but are the harms really as
minimal as they claim?

Firstly, I would deny that the concerns expressed by Lord Winston
about commodification of donor babies can be so easily dismissed. Wanting
a baby for instrumental reasons alone cannot be acceptable in the
civilised world. In this case parents want a child purely for its
characteristics (i.e. its tissue type). Indeed, Boyle and Savulescu tell
us that, ‘the alternative for the child who was conceived to provide stem
cells is not another life in which he or she was conceived in a different
way, but non-existence’. So the fact that Kant’s dictum was “never use
people solely as a means” is not a reassurance, because, in Boyle and
Savulescu’s argument these donor babies are solely means to an end – the
successful treatment of the ailing sibling.

The Nash parents used the assertion that they wanted another child
anyway as an argument to deny accusations of commodification. Thus, the
alternative to the child who was conceived to provide stem cells is, in
fact, a child who was conceived for his/her own intrinsic value. Dr
Stuttaford, in the Times argued in the Nash’s favour that ‘provided that
the provision of stem cells was only a fortuitous spin off from the desire
to have another child, and the baby was wanted for its own sake, few
doctors would complain’(2) . This is known as the ‘double effect
principle’- that an action that has a beneficial objective may be
undertaken even though it has a potentially harmful coincidental effect.
In other words, the beneficial objective of having another child is
acceptable even though it risks a potentially harmful effect of creating a
donor baby. But even this argument does not hold water. The provision of
stem cells was not ‘only a fortuitous spin off’ but a calculated result.
In the past, parents have had additional children in the hope that they
will be suitable donors for their older siblings, but always in the
knowledge that there was only a chance that the baby would be tissue
compatible. The emphasis in using PGD to create a donor baby is on
guaranteeing a donor. This distinction has a material impact on the
ethical quality of the decision being made by parents.

Boyle and Savulescu talk about the harms to the child. Indeed they
are correct in saying that it is unknown how a child may feel to find that
it was born in order to save the life of its sibling. And it is
interesting to see that no attempt is made to answer the questions that
are raised about ‘what if the stem cell transplant is unsuccessful?’ But
are psychological harms the only risks to the donor baby? Boyle and
Savulescu assert that cord blood collection is harmless in that it
involves no pain nor risk to the baby’s health. This confidence is not
shared by the Royal College of Obstetricians and Gynaecologists who have
expressed concern about the potential risks to both mother and child (3).
There is also the risk of both psychological and physical future harms to
the donor baby .

The current level of scientific knowledge does not allow any accurate
assessment of the risks that the donor child has because of his/her chosen
tissue type. It cannot be said with any confidence that a person’s tissue
type does not have any health implications in terms of longevity, or
susceptibility to late-onset disorders. In choosing a certain tissue type,
parents may be choosing to have a child who will later go on to suffer
higher morbidity and earlier mortality than a non-compatible child.

In the Nash case, Molly Nash suffers from Fanconi anaemia (FA). One
of the features of FA is that its sufferers frequently have other organ
abnormalities, with 25% suffering from renal abnormalities. They are also
more likely (18-20%) to suffer from other cancers, especially leukaemias.
Will Adam be called upon in years to come to supply bone marrow to treat
his sister’s leukaemia, or a kidney for her renal failure?

In the ‘Peters’ case, their son’s leukaemia is currently in
remission, but has a 25% chance of a relapse. The volume of cord blood is
very small and as such is only effective in treating young children. If
the son is older when the relapse occurs, then the stored stem cells will
be insufficient and will need supplementing with bone marrow. Are we
prepared to believe that in both these cases there is no pain, and no harm
caused?

In law, it is common for parents to consent to treatment on behalf
of their sick children, in their capacity as proxy decision-makers. But it
is generally accepted as being unethical for parents to consent to
unnecessary tests or treatment that are not in the interests of the child
itself. Not only that, but as the law stands in both England and Scotland,
there can be no legal justification – except perhaps necessity - for any
non-therapeutic invasion of the bodily integrity of an incapacitated
person. Necessity, again, refers only to what is necessary in the best
interests of the patient him/herself, and so would not validate consent to
interventions to benefit a third party.

Finally, Boyle and Savulescu tell us that there should be minimal
intervention in the choices made by parents in their search for a
treatment for their child. Parents will naturally be distraught at the
prospect of the death of a much loved child, and will do almost anything
to prevent that death. What does this say about the quality of the
parent’s decision? Where terminally ill patients are asked to consent to
participate in clinical trials, such as for new cancer treatments, AIDS
drugs, or accepting xenotransplantation, concern has been raised about
‘free and informed consent’. Surely the same concern must exist in the
former scenario.

Footnotes

(1) Robert J Boyle and Julian Savulescu (2001): Ethics of Using Pre-
implantation Genetic Diagnosis to Select a Stem Cell Donor for an Existing
Person. BMJ 2001; 323:1240-1243 (24 November)

(2)Thomas Stuttaford, The Times 4th October 2000, p. 4

(3)Zosia Kmietowicz “Doctors Object to Companies Offering to Store Cord
Blood” BMJ 2001; 323:1203 (24 November)

Competing Interests: There are no competing interests