Ethical Considerations for Tissue
Typing in Order to Detect Human Leukocyte Antigen (HLA) Compatibility
- Frida Simonstein, MSc., Ph.D.
Centre for Social Ethics and Policy, School of Law, University
of Manchester. UK.
Center for Health Care Management, Yezreel Valley College,
Israel
Email: fridafux@netvision.net.ilEubios Journal of Asian and International Bioethics 13 (2003), 219-21.
Abstract
During 2002, the Human
Fertilization and Embryology Authority (HFEA) in the United Kingdom which
regulates in vitro fertilization (IVF) clinics, agreed to allow a family to
attempt to create a baby genetically selected for human leukocyte antigen (HLA)
to help treat a desperately ill child. In a second case, however, the HFEA did
not allow parents to screen IVF embryos for a genetic match because the embryos
were at very low risk to have the same genetic disease. Reactions against the
first HFEA decision have shown profound outrage, expressing that having a child
for the sake of the other is improper, immoral and 'against human dignity'.
Other claims were, "we should protect vulnerable human life", and "human beings
should not be treated 'as a means to an end'". None of these moral claims stand
rational and coherent scrutiny, however. This paper maintains that making a
child to save the life of a sibling is not only ethically permissible but it
would rather be unethical NOT to do so.
Keywords:
genetic screening, in-vitro fertilization (IVF) pre-implantation genetic
diagnosis (PGD).
Introduction
Almost two decades ago, discussing
in vitro fertilization (IVF) R. M. Hare observed that since the problems are
new, we ought to be cautious in applying old precepts to them; these precepts,
he remarked "got generally accepted when things were very different from what
they are now or may become."( Hare, 1985). Ronald Dworkin, has more recently
suggested that genetic science offers a pending dislocation of our moral values
(Dworkin,. 2002.). The following case reflects Hare's warning and Dworkin's
insight.
During 2002 the Human Fertilization
and Embryology Authority (HFEA) in the United Kingdom, which regulates IVF
clinics, agreed to allow a family to attempt to create a baby genetically
selected to help treat a desperately ill child. The tissue typing tests were
designed to help select embryos that would match their son who suffers from a
blood genetic disease, Thalasemia. At birth - stems cells from the umbilical
cord of the newborn would serve to be implanted and thus save the first child.
In a second case, however, the HFEA, decided differently and did not allow
parents to screen IVF embryos for HLA compatibility to help a sibling, because
the embryos themselves were at very low risk to have the same genetic disease.
Some reactions against the first
HFEA decision, namely, permitting the procedure, have been particularly angry
and reflected profound outrage, expressing the feeling that having a child for
the sake of the other is improper, immoral and 'against human dignity'. Other
claims were, "we should protect vulnerable human life", and "human beings
should not be treated 'as a means to an end'"(BBC News, 18 July 2002). The first HFEA decision was brought
to the High Court by the public interest group Comment on Reproductive Ethics
(CORE), explicitly, "against the right of the HFEA to permit pre-implantation
genetic diagnosis (PGD) for the creation of human embryos as specific tissue
matches for sick siblings" (COREethics 20 December, 2002). On December 2002 the High Court ruled that the
Human Fertilization and Embryology Authority (HFEA) did not have the power to
license the technique under existing legislation. But on May 2003 an Appeal
Court decision overturned this decision. The judges, however, remarked that
this ruling was a "one-off". In the future every case of its type
would have to be assessed on its own merits (BBC News, 20
May, 2003).
This paper will not address the
question endorsed by the Courts in the UK namely, whether the HFEA did or did
not have the power to license the technique under existing legislation. The
purpose of this paper is to explore whether the societal claims against using
PGD for tissue typing - in order to detect HLA compatibility - to save an
existing child, as reflected by the media in the UK, are coherent with the
values and principles these claims pretend to protect.
Claim One: 'We Should Protect Vulnerable Human Life'.
Trying to
save the life of a child - any child - means to respect and protect 'vulnerable
human life'; saving the life of this particular child is therefore the duty of
both parents and doctors. Certainly we should always ask what exactly the means
and the ends are. In the present case however - not choosing a particular
embryo means a death sentence for a living child whilst screening to choose a
genetic match may serve a good purpose. It remains obscure why the life of the
existent child is less vulnerable - and less important - than the life of an
embryo, any of them.
Moreover,
suppose there is a matching embryo in that petri-dish...
á
If we choose it - the existing child lives.
á
If we do not choose it - the existing child dies.
Not choosing the matching embryo
- if there were one in the petri-dish - would be equivalent to getting a rope
to save a person from drowning and yet letting him drown. If a parent let his
child drown he or she would certainly be liable for negligence.
Claim Two:
'This Method Opposes 'Human Dignity'
It remains unclear how and why choosing one embryo
that is a genetic match and can save his sibling's life, can overrule human
dignity; apart from the fact that this is a novel procedure, which we are not
used to. For we search for genetic matches of bone marrow all over the world in
order to save a life, and we do not think this is necessarily 'against human
dignity'. It seems we approve genetic brute luck because the match, if we are
lucky to find one, remains - comfortably for our settled values - a 'lottery'.
Now suppose that, completely by chance, the new child
is born a perfect genetic match. If this were the case, we would certainly use
the stem cells from his umbilical cord and save the first child. It is unlikely
that in this case someone would object to this; which clearly shows that what
people fear most is genetic choice whilst
genetic chance - is happily welcome. But why is it that genetic choice does
threaten 'human dignity' whilst genetic chance is applauded? Ronald Dworkin has
sharply observed that it seems the terror many of us feel at the thought of new
reproduction technologies (although Dworkin refers specifically to genetic
engineering) is not the fear of what is wrong; "it is rather, a fear of
losing our grip on what is wrong"( Dworkin, 2002, 446. my italics). Dworkin suggests
that we dread the prospect of people designing other people - in this case
choosing a genetic match - because,
"(t)hat
possibility in itself shifts ... the chance/choice boundary that structures our
values as a whole, and such a shift threatens, not to offend any of our present
values, but on the contrary, to make a great of these suddenly obsolete" (Dworkin, 2002, 444).
We may fear losing our grip on
what is right or wrong however we ought to define once more, afresh, what the
best thing to do under New Reproduction Technologies [NERT] perspectives should
be. Preventing parents from saving the life of an existent child is inconsistent
with what 'human dignity' implies. For if the process hurts nobody and the life
of a child may be saved on the other hand, then we ought to save this life.
Even if this new remedy - using NERT - knocks uncomfortably down some of our
old precepts of what is right and wrong.
Claim Three: 'We Should Not Treat People As A Means To An
End'
HFEA chairman Suzy Leather denied
they agreed to create a baby who would have to give 'spare parts' to save a
sibling, she explained that what the authority agreed to do was - only - to
allow parents to choose an embryo that when it developed into a child "was not
going to suffer from precisely the same horrible disease" (BBC News, 18 July
2002).
It is puzzling however why
screening to avoid having a child who will suffer from a 'horrible disease' is
morally 'right' while screening to choose a genetic match among the embryos to
save the life of a living child
suffering exactly from the same disease is morally 'wrong'.
Human beings should generally not
be treated as a means. However there are certain exemptions, for we usually
beget a child because we want to rear a child; which means that a child
might sometimes serve a purpose, in that case, to fulfill our own desire to
become parents. Moreover, sometimes we may choose to beget another child just
in order 'to make company' to a first child. Nobody has however ever demanded
or thought that this may be wrong. If this is so in those cases then making a
child to save the life of another - if the new child is wanted and will be
loved - is not different to making a child to play with another but certainly,
more crucial.
The public interest group CORE,
however, proclaims to campaign "against any procedure which puts one child at
the disposal of another human being, no matter how emotional and moving the
circumstances which motivate such proposals"
(see www.coreethics.org). The meaning of which seems to be: "I would rather cut
my ears off and my eyes out than hearing or seeing anything that may undermine
the actual validity of my moral principles." And yet, there is at least one
example of putting a child at the 'disposal' of other human beings to which we
are - most unfortunately - quite used: we send 18-year-old youngsters to war.
We think this is permissible because war defends our values and our loved ones.
In other words we think that to sacrifice the lives of those youngsters for the
sake of other human beings is permissible when it is 'for a good cause'. Making
a new child to save the other will certainly serve a good cause but unlike in
the case of war, nobody will be sacrificed. I will return to this point in a
moment.
Will The New Child Be Wronged?
The cause in this case is
undoubtedly worthy, to save the life of an existing child, but the means,
namely bringing purposely to life a child by choosing it, one among many others
whilst still in a petri-dish, seems to
be the problem. However we ought to ask in this case whether this particular
embryo would be harmed or wronged whilst chosen.
Existing theories of self-interest
suggest that we should always choose what is for the best interest of
non-existing people (Parfit, 1984; Harris, 1998, Savulescu, 2001). The embryos
not chosen however are obviously not wronged because we cannot wrong
non-existent people (Hare, 1975; Harris, 1998). Clearly, we must here focus on
the embryo purposely chosen to save the life of his brother. Would this child
be harmed? The answer to this question is confidently, 'No'; for the 'spare
parts' that the new baby will 'donate' when he is born to his sibling - are
stem cells from his umbilical cord, which is anyway a part of the baby, which
ends in the bin (Wolf, 1999). Saving stem cells immediately after delivery is a
procedure which is becoming routine in the US were parents acknowledging the
value of these cells are saving them in specialized banks for future use if
their child would need a perfect match. So physically the new child will
certainly not be harmed.
Would the new child be wronged?
The answer to this question seems to me paramount. I have noted above that if
this child is wanted and loved then there is nothing wrong by having this
child. It can be suggested however, that this child is wanted only to save the
life of his brother and thus - he might not be loved. And yet parents that
undergo such an ordeal in order to save the life of their child might be
remarkably loving parents; which certainly does not ensure they will love their
new child as they love the existing child, however it is perhaps unlikely that
such parents will neglect the new child; especially if he had saved the life of
the other child. Besides, we do not usually ask parents-to-be if they are going
to love their children when and if they have them. Take, for example, parents
that decide to have the third child because they believe a good family 'should
have three kids and a dog'. Do we ask these parents if they will love the third
child? Clearly we do not. Finally, if we believe life is worth then being
brought to life certainly benefits the chosen child.
Who Gains, Who Loses?
John Harris has observed that
there is no doubt that caution is indicated when considering the acceptability
of scientific 'advance' and the use of new technology. However, he adds:
"Equally we must be cautious about needlessly denying
ourselves the benefit of such advance and such technology, particularly when it
offers much needed and much desired treatment or offers a legitimate extension
of human choice." (Harris, 1998a).
The question of course is always,
as Harris remarks, whether or not such choices are legitimate. Is this choice -
genetic screening for a match in an embryo to save its sibling - legitimate? In
Hebrew there is a saying which in translation is: "gain for one, loss for
none". In this case one child gain is life and the new child loses nothing - on
the contrary, he gains his life.
Summing Up
If there is no attempt to explore
beyond words, explaining how exactly moral values apply, then principles become
hollow notions, emptied of their real value, slogans obstructing further
reasoning. We may perhaps bind ourselves blindly to concepts that might be out
of date instead of carefully revise afresh our moral principles and values
under the new perspectives.
None of the moral claims above
stands rational and coherent scrutiny.
Genetic screening for a match in an embryo to save a sibling is not unethical
because the second child is not harmed and not wronged - whilst the first child
may be saved. Moreover, by the present analysis, making a child to save the
life of his brother is not only ethically permissible but it would rather be
unethical NOT to do so.
Sources
Harris, J.1998a, 'Rights and Reproductive
Choice'. In, The Future of Human Reproduction. Ethics, Choice and Regulation. Ed. John Harris and S¢ren Holm. Oxford: Oxford
University Press.
Wolf, S. 1999, 'Storing lifeblood: Cord Blood
Stem Cell Banking'. American Journal of Nursing 99, 64-66.
'Making a child to save the other' 2003, 20 May, BBC News,
'CORE wins judicial review against the HFEA', 2002, 20
December. COREethics http://www.corethics.org/
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