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Lives to save lives – the ethics of tissue typing
STEPHEN BELLAMY
St James’ Vicarage, Southport, UK
AbstractShould we allow tissue typing of in vitro embryos in order to implant those which could provide potentially life-saving cells toan existing serious ill sibling with that tissue type? A case is made that such tissue matching does not involve unacceptableinstrumentality towards or commodification of children. The key distinction is that the parents’ request for tissue typing isreactive in the face of serious medical need rather than being proactive in the sense of seeking the means to specify a childwith chosen desirable characteristics. Nevertheless, as preimplantation genetic diagnosis (PGD) is a relatively newtechnique, both long-term safety issues concerning effects on child development following embryo biopsy and the risks ofmisdiagnosis must be given due weight as must the avoidance of exploitation of couples desperate to save a sick child. TheHFEA originally made a distinction, recently revoked, between allowing tissue typing after PGD to select against affectedembryos and denying it when PGD is not required because the embryos are not at risk of inheriting the disease suffered bythe existing sibling. If tissue typing is not inherently unethical and misdiagnosis poses a greater risk than biopsy damage, thenthis distinction is not ethically tenable.
Preface: Moral Awe – a framework for ethical
debate by Rt. Revd James Jones, Bishop of
Liverpool
A major current difficulty in the discussion of ethics
is the establishment of any consensus concerning the
ethical system we are applying.
In a pluriform, multicultural and multi faith
society, people are reasonably content to allow
individuals their own personal and private moral
opinions and even to acknowledge that these are
important for them to hold. Yet the proposition
that there is some ethical system that is binding on
the whole community suggests a degree of absolut-
ism which sits unfavourably with the mood of
relativism and the culture of subjectivism. Today,
people are encouraged to do what they think is
right, which is very different from their being told
to do what is right. So, when no-one’s moral
opinion is deemed to be better or worse than
anyone else’s, how are we to chart an ethical
course e.g. in our use of new technologies which
handle the essence of human life?
I suggest that, although we live in an age of
opinions, there is a moral consensus which should be
emphasised as a means of recovering to public debate
a sense of moral awe.
This ethical quality of moral awe is characterized
by four hallmarks. First, all our actions spring from
and shape our characters. Secondly, all our actions
have consequences, both individually and socially,
even though these may not be revealed immediately.
Thirdly, all our actions will be judged by future
generations. Fourthly, we are all responsible for our
actions to whatever or whoever is the source of our
moral intuition.
These hallmarks of moral awe provide basic
criteria which both form and express a moral attitude
and can be embraced by people of every faith or of
none. While not providing standard answers to every
ethical dilemma, nevertheless their adoption creates
a moral atmosphere in which we maintain a due
sense of reverence and humility before the mysteries
of life.
Even well informed lay people can feel blinded by
science as its discoveries and associated technology
proceed apace. In order for the community to trust
scientists, we need to be assured that they approach
their task with humility and reverence. Recovering a
sense of moral awe in decision-making would create
Correspondence: Revd. Stephen Bellamy, St James’ Vicarage, 26 Lulworth Road, Southport, PR8 2BQ, UK. Tel: 01704-566255. Fax: 01704-564907. E-mail:
Human Fertility, March 2005; 8(1): 5 – 11
ISSN 1464-7273 print/ISSN 1742-8149 online # British Fertility Society
DOI: 10.1080/14647270500030597
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greater confidence that scientific research and
experimentation is indeed for the common good.
Lives to save lives – the ethical issues
HLA (Human Leukocyte Antigen) tissue typing of
IVF embryos is intended to facilitate the selection
and implantation of an embryo, which shares the
HLA type of an existing seriously ill sibling. At the
resulting child’s birth, umbilical cord blood and
placental blood can be collected and subsequently
used as a source of potentially life-saving stem cells
for its sick sibling.
There are widely divergent opinions about the
acceptability of this new technology and while this
account draws on Christian ethical principles, it
makes no pretension to be the only possible Christian
assessment.
Not everyone will consider the tissue typing (TT)
of embryos to be a dilemma. Those who hold that an
IVF embryo has the same moral status as a person
will immediately conclude that TT is wrong (as they
would any form of IVF which involves the destruc-
tion of embryos). Though some Christians and
others conscientiously take this view, it is not one I
feel compelled to adopt either from a consideration
of scripture or science. From the opposite extreme,
those who deny that an IVF embryo has any moral
status at all (or perhaps that parental autonomy over
the use of embryos will consistently overrule all other
considerations) will have no hesitation in concluding
that TT is acceptable.
TT provides a dilemma only for those, like me,
who believe that the IVF embryo is to be afforded
some moral weight even if it is not of the same moral
status as a living person. This implies a degree of
respect for embryos, so that they can only be used in
limited ways and is the general position of the 1990
HFE Act. In Christian terms we might say that the
IVF embryo is in the process of development in which
it may subsequently, after further human interven-
tion, become a person made in the image of God.
Together with this view of the embryo, I wish to
give adequate weight to the strong Christian mandate
to heal while acknowledging that not all possible
methods of healing will be acceptable and that the
ultimate wholeness of human beings is neither
physical nor fully attainable during this life.
The dilemma then presents itself in terms of
whether the techniques of pre-implantation genetic
diagnosis (PGD) and TT provide an ethically
acceptable method of attempting to heal an existing
seriously ill sibling. Bishop James has already alluded
to our responsibility for appropriate stewardship of
creation especially in approaching the mysteries of
life with a moral awe, which enjoins upon us an
attitude of reverence and humility.
The ethical assessment of TT should therefore be
undertaken remembering that we did not create and
design ourselves; that we are not ethically infallible
and may lack the wisdom always to make the right
decisions and that we face great responsibilities in
making selection decisions about IVF embryos. One
consequence of this approach will be that we face the
necessity of going back and tightening our laws if our
decisions are shown, after further monitoring, to
have been wrong e.g. if we find that a risk taken has
been too great.
Two significant areas of ethical debate concern-
ing TT will be examined. These are: embryo
selection issues, which consider possible intrinsic
reasons against selecting embryos for tissue type
and safety issues, which concern the risks inherent
in the procedures.
Embryo selection issues
Commodification of children
Receiving children into a family as a gift and, more
specifically, as a gift of God is a widely held
Christian principle. A significant consideration
regarding TT, therefore, is whether TT entails
treating the resulting child as a commodity rather
than accepting him/her with love as a gift of God.
Interviews with the two families, the Hashmis and
the Whitakers (Channel 4 Television, 2003; BBC
Television, 2003), whose requests for TT have
been very publicly documented, indicate the depth
of love these families have for their children. This
is confirmed by their being willing to undergo the
arduous processes TT requires for the sake of their
existing unwell child. It is unlikely that they would
refuse to extend that same love to any further child
of theirs (Pennings, Schots, & Liebahrs, 2002,
p.536). Thus TT itself does not prevent a child
being loved nor does it preclude his/her acceptance
as a gift.
Another major concern is whether TT is a step
on a ‘slippery slope’ to so-called ‘designer babies’.
Since the process in TT is one of selection rather
than design of embryos, the phrase ‘designer
babies’ is misapplied in the present context; it
implies the specification and choice of character-
istics which parents consider desirable in their
offspring. Requests for TT differ because they are
not motivated by parental whim. The Hashmi and
Whitaker families would far prefer not to have been
in the position of needing to choose an embryo;
they were being driven by a compassionate
response to medical necessity and not by personal
desire.
The reactive nature of the parents’ request for
TT is of a different character from any proactive
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desire to fashion the ‘child of my choice’. This is
the decisive distinction which can be used to fence
off the feared slippery slope. At the bottom of this
slope lies the treatment of children as commodities,
as our objects or projects to be selected for the
genetic traits we would prefer in our offspring. TT
is clearly not that, and it should be possible to
legislate so that TT remains the one and only
allowable instance of the selection of a genetic trait
which is itself incidental to the future health of the
embryo being selected. Thus a case can be made
that TT is not a trivial or capricious use of
embryos nor is it bound to lead to such a use.
The commodification debate raises the more
general question of the limits to parental choice in
the use of embryos. With options about the use of
embryos being delivered into the most consumerist
society in history, we can be grateful that, in the UK
at least, we have regulations policed by the HFEA
and a principle of ‘constrained parental decision
making’ (Ethics Committee (HFEA), 2001, para.
3.11). While space precludes discussion of the
dangers of the unrestrained parental autonomy
advocated by some (e.g. Robertson, 1994; Harris,
2000; Boyle, & Savulescu, 2001), we should note
that if parental rights over embryos were allowed
invariably to take precedence over parental respon-
sibilities to future children, we would have become
market led (for parents are the market) and would
allow embryos no significance compared with par-
ental desire.
Instrumentality
Kant’s dictum that we should treat human beings
‘never simply as a means but always at the same time
as an end’ (Kant, 1964) has been used to oppose
embryo selection for tissue type on the grounds that
it appears to be an unacceptably instrumental use of
human beings. This argument would certainly stand
if the resulting child were abandoned and unloved
once they had made the life-saving donation of stem
cells or if the child were subjected to painful and
invasive procedures against its will for the sake of
another. My previous comments about the love for
children demonstrated by families requesting TT
apply again. Moreover, the stipulation by the HFEA
(2002b) that the intention should be to take only
cord blood from the donor child further diminishes
any appeal to instrumentality in the use of the
resulting child’s body. However, more recently the
HFEA has relaxed this restriction preferring to leave
the question of bone marrow donation to doctors
and patients (HFEA, 2004b, p.3). If the stem cell
transfusion failed and a subsequent request was
made for bone marrow from the donor sibling, the
normal procedures in assessing such donations by
children would apply. Certainly there is no ongoing
obligation imposed on a child by which s/he should
be forced to co-operate indefinitely. Indeed the
HFEA has noted that in these circumstances ‘such
a child would enjoy the same protection as any other
child against medical interventions that are not in
their best interests’ (HFEA, 2001a).
In assessing the possibility of unacceptable in-
strumentality it should also be admitted that children
are born from a wide range of parental motives.
These imply varying degrees of instrumentality with
some appearing more acceptable than others. Such
motives include having a child who will: run the
family business, keep the line going, look after me in
my old age, hold our marriage together, be someone
to share our love with, enable us to enjoy being mum
and dad, be the daughter/son we want to have. As the
theologian Ted Peters comments ‘when it comes to
bringing children into the world. . ... all parents have
mixed motives all of the time’ (T. Peters, personal
communication). Thus, in line with the assertion
that children are to be received as gift, the overriding
need is for the resulting child to be accepted for him/
herself with love. This will be, for Christians, a
necessary yet not sufficient condition for proceeding
because receiving the child with love would not itself
validate the selection of traits in embryos which was
done in a way that commodifies the child-to-be and
distorts the relationship of loving acceptance that
parents-to-be should have for their child.
It could be suggested that selecting a tissue
matched embryo will cause psychological problems
later for the resulting child about his/her only being
wanted because of their tissue type. Yet such
difficulties are far from inevitable because much
depends on how the situation is handled within the
family. Certainly with love, care and the grace of
God, there need be no major problem any more than
there need be in the explanation of other less usual
family circumstances such as adoption.
A case can therefore be made that unacceptable
commodification, instrumentality and psychological
harm are not inherent in the process of TT when
used to provide a donor for an ailing sibling.
However the question can be raised about whether
TT should be allowed for the purpose of providing
donor cells to help not a sibling, but perhaps a sick
parent or other close relation. In such cases it is a
partial HLA match that would be sought as it would
not be possible to achieve a complete HLA-match.
Anver Kuliev has commented that any embryo
inheriting its HLA coding on both copies of its
chromosome 6 from only one parent would be not
only rare but also likely to suffer adverse effects. He
suggests that the necessary partial tissue match to aid
a non-sibling would be much more practically
achieved by searching existing donor registers than
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by selecting a tissue-matched embryo (A. Kuliev,
personal communication). Using the latter method
in these circumstances would go beyond regarding
TT as a last resort. Moreover, part of the evidence
that parents using TT to help an ailing sibling are not
guilty of unacceptable instrumentality or commodi-
fication comes from their demonstration of love for
their children revealed by their strenuous efforts to
save the ailing sibling. Such evidence would be
lacking if the embryo selected as a donor for a non-
sibling were to be a first child. Furthermore, the case
of seeking a donor to help a parent introduces self-
interest as a major factor in selecting the child. The
HFEA originally ruled out TT in order to help a
parent (HFEA, 2002b) on the advice of its Ethics
Committee (2001, para. 3.15) but it is now sounding
more equivocal, suggesting that the matter is more
ethically problematic and needs further considera-
tion (HFEA, 2004b, p. 5). Those who believe as I do
that embryo selection is permissible within a
narrowly defined range of medical purposes which
do not distort the child-parent relationship nor
involve unacceptable instrumentality or commodifi-
cation, will wish to hold the HFEA to its assertion
that TT really is a ‘last resort’ procedure (HFEA,
2004c).
Questioning the distinction made between the
Hashmis and the Whitakers
Under British law, PGD followed by embryo
selection is permitted in order to avoid having a
child suffering from a serious inherited disease of
which the family are at risk. The Hashmi family
were given permission (HFEA, 2001b) not only to
do PGD to ensure that a future child was not
affected by the Beta thalassemia from which their
son, Zain, suffers but also to tissue type the
unaffected embryos with a view to finding a suitable
donor for Zain. In contrast, the Whitakers were
denied TT in the UK (HFEA, 2002b) when seeking
a tissue-matched embryo to serve as a donor for
their son Charlie who suffers from Diamond
Blackfan Anaemia. This refusal was because Char-
lie’s disease cannot be tested for and is probably not
inherited but the result of a spontaneous mutation.
Thus the legal condition of allowing PGD to avoid
serious disease was not applicable. While the denial
of TT to the Whitakers was entirely correct under
HFEA rules at that time, the ethical foundation of
the distinction made by the HFEA between the two
families is open to challenge.
Consider the situation if both the Hashmis and
Whitakers had been given permission to proceed and
had produced, say, 8 IVF embryos suitable for
implantation. Statistically, the Hashmis would dis-
card 2 embryos, the 25% affected by Beta
thalassemia. Of the remaining 6 embryos, there
would on average be 25% with the correct tissue
type to donate to Zain, i.e. probably 1 or 2 tissue
matched embryos. Of the 8 Whitaker embryos, there
would probably be 25%, i.e. 2, tissue matched
embryos. In the cases of both the Hashmi and
Whitaker embryos the same risk from the biopsy
procedure in PGD would have been applied to
‘healthy’, i.e. unaffected embryos and the same
discard would have occurred of 75% of ‘healthy’
but non-tissue-matched embryos.
The HFEA (2001b) ruled that the risk from
performing PGD was acceptable in the Hashmis’
case where disease is being avoided and that TT was
also acceptable. Certainly, from the safety perspec-
tive, TT entails no further risk to the embryo because
the same cell removed for PGD can usually be used
in the TT analysis, though sometimes two cells may
be needed and this could increase the risk of damage
to the embryo.
Moreover, it was suggested (Leather, 2003) that
PGD benefits embryos which are proven to be
unaffected by disease, a benefit not applicable in
the Whitakers’ case. This attribution of benefit to
embryos through doing PGD has been questioned by
Pattinson (2003) and a case can be made that the
chief benefit from doing PGD actually accrues to the
parents in giving them the information they require
to implant an unaffected embryo. If sustainable, this
argument suggests that it is a third party - the parents
- who benefit most from PGD and therefore that the
fact that TT benefits third parties - the parents and
the ailing sibling - is not a novel ethical departure.
The suggestion (Ethics Committee (HFEA), 2001,
para. 3.7) that the embryo/child which ultimately
provides life-saving cells benefits both by saving its
family from a serious bereavement and from enjoying
the sibling whose life it has helped to save has been
assessed as somewhat artificial (Pennings et al.,
2002, p. 537).
Safety issues
Turning to key questions about the safety of PGD, it
is necessary to assess the degree of risk involved in
two particular areas : (i) biopsy damage to the
embryo and (ii) misdiagnosis of disease or of tissue
type.
Biopsy damage to the embryo
Leather (2003) comments that while ‘PGD da-
mages and destroys some embryos’, yet ‘ it seems
safe for those which develop into fetuses and
subsequently into children’. This is a fair conclusion
based on the available evidence from surveys of
obstetric outcome (ESHRE PGD Consortium,
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2002; Ouhibi et al., 2003; ESHRE Task Force,
2003; Strom et al., 2000; Verlinsky et al., 2004).
However, several practitioners and ethicists (e.g.
Flinter, 2001; HFEA/HGC, 2001; Holm, 2000;
Leather, 2003; Winston & Hardy, 2002) note that
although short-term evidence suggests no ill effects
from embryo biopsy, its longer-term effects on child
development are not known and follow-up studies
will be important. I am indebted to Caroline Berry
(C. Berry, personal communication) for emphasis-
ing the urgent need for a full long-term follow-up
study of a large cohort of children born after PGD
in order to provide a proper assessment of the safety
risks posed to child development by PGD. The
ESHRE PGD Consortium plans to seek funding
from the EU for such a follow up project (Sermon
et al., 2004).
Misdiagnosis of disease or of tissue type
The HFEA’s patient information on PGD quotes a
risk of misdiagnosis at around 5% (HFEA, 2002a).
Lewis et al. (2001) report that when only disease
alleles were analysed, there was a 5.8% misdiagnosis
rate of unaffected embryos as affected in the case of a
recessive disease and a corresponding 10.9% error
for a dominant disease. However, when a linked
marker was analysed as well as the disease alleles, the
probability of error in these cases fell to 0.44% and
0.1%, respectively. Interestingly, an attempt to tissue
type embryos after PGD has reported 100% accuracy
in diagnosing the tissue type of all 54 embryos tested
(Van de Velde et al., 2004).
Winston and Hardy’s (2002) comments that, in
PGD, misdiagnosis appears to be a greater risk than
biopsy damage appear to be confirmed by the
available evidence. If this is correct, then we should
note that there are two points of this greater risk in
cases like that of the Hashmis – the possible
misdiagnosis of an affected embryo and the possible
misdiagnosis of tissue match. Yet only this latter
point of greater risk is present in the Whitakers’ case.
Thus, if misdiagnosis is indeed a greater risk than
biopsy damage, then the HFEA allowed the Hashmis
to take greater risks than would the Whitakers.
It has been argued above that embryo selection
considerations do not prohibit the use of TT on
ethical grounds. The HFEA took this view when it
gave permission to the Hashmis to tissue type. If,
in addition, biopsy damage to an embryo (and
subsequent child) is not a major risk in doing
PGD, then it follows that families in both the
Whitakers’ and the Hashmis’ situations should be
treated similarly. This suggests that TT should be
allowed for neither family or for both. The HFEA
Ethics Committee (2001, para. 3.14) argued in
favour of allowing both families to tissue type but
the full HFEA (2001b) did not endorse this
opinion.
Since this article was first submitted, the HFEA
has changed its rules to allow families in the
Whitakers’ position to use TT when there is no
additional need for PGD to avoid disease (HFEA,
2004c). This decision is consonant with the above
argument that no distinction should have been
made between the Hashmis and the Whitakers.
However, given both the lack of public consulta-
tion on the issue and the fact that British law does
not currently legislate on TT, it is perhaps
surprising that either family has yet been allowed
to proceed with TT. Significantly, the Science and
Technology Committee of the House of Commons
(2002) criticised the HFEA for going beyond its
stated intention (HFEA/HGC, 2001) of fuller
deliberation before any permission to tissue type
was granted. Roger Brownsword has provided a
cogent criticism of the Appeal Court’s rationale for
reinstating the Hashmis’ right to pursue TT
(Brownsword, 2004). In exposing the somewhat
thin argument that the HFE Act of 1990 does
allow the HFEA to decide about TT, he also
points out that the judgement contained some
dangerously ambiguous comments about women
being assisted to have children with ‘desired
characteristics’ and about the child’s suitability for
the woman’s purpose (Brownsword, 2004, p. 309,
318). Hopefully the HFEA will be unwilling to rely
on such statements in the judgement which are so
open to misuse and distortion. It has certainly
intimated its support for revision and clarification
of the law in this area (HFEA, 2004a). This is
surely overdue given that PGD was only just being
achieved as the law was passed and TT was not
then possible.
Avoiding the exploitation of desperate couples
In view of the pressing need felt by parents
requesting TT to try and save an ailing sibling, it
is clear that accurate and transparent information
and counselling for parents is vital regarding (a)
the risks of biopsy damage or misdiagnosis in PGD
and TT and (b) the physical, emotional and
financial cost of repeated cycles of treatment with
low likelihood of success. Regarding the latter, the
public consultation document on PGD (HFEA/
ACGT, 1999) noted that in about one third of all
PGD cases only one embryo is diagnosed as
suitable for transfer. This makes repeated IVF
cycles more likely even when PGD is used solely to
avoid disease. This situation is greatly exacerbated
when performing TT as well as PGD as this
reduces by, on average, 75% the already smaller
number of embryos considered for transfer. This
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suggests that couples will need comprehensive
professional support and advice about the heavy
physical and mental demands of undergoing
repeated IVF cycles when both PGD and TT are
attempted. Robert Winston criticised the decision
to allow the Hashmis to do both PGD and TT,
doubting whether it was right for couples to have
their hopes greatly raised by this procedure (BBC
News, 2002). While other comments he has made
suggest that he is not averse to TT per se, the sad
news that the Hashmis had to abandon their hopes
of a tissue-matched embryo after six IVF cycles
indicates that his concern has substance. Winston
and Hardy (2002) warn of the combination of
‘patient desperation, medical hubris and commer-
cial pressures’ which can lead to less than ethical
decision making about the use of reproductive
technology.
Conclusions
Six significant conclusions can be drawn from the
above discussion:
1. A case can be made that TT itself would not
involve unacceptable commodification, instru-
mentality or psychological damage to the
resulting child. Central to this case is the
reactive rather than proactive nature of the
parents’ request for embryo selection, which is
borne of medical necessity and the compassio-
nate parental desire to heal a seriously ill child
rather than parental whim.
2. Questions remain about the safety of PGD, so
that careful attention must be given to the
results of a long-term study on risks to child
development from PGD.
3. If a long term safety study suggests that the risk
of damage from biopsy is within acceptable
limits, the ethical case can be made to allow
families like the Whitakers also to do TT, as in
their cases the procedure involves less risk of
the other possible drawback – misdiagnosis –
than in cases like that of the Hashmis, where
PGD is required in addition to TT.
4. If a long-term safety study suggests that there is
an unacceptable risk of damage from biopsy or
of misdiagnosis, the law on the use of PGD
(either for TT or for the avoidance of disease)
needs to be redrawn accordingly.
5. Parents urgently seeking TT to help an ailing
sibling need careful protection from exploita-
tion of their desperation. This suggests access
to independent but informed counselling about
both the wisdom of continuing with further
stressful and expensive cycles of treatment and
the risks involved from biopsy and misdiagno-
sis.
6. Specific legislation concerning TT is necessary
following informed public debate, as it is
questionable whether it should be allowed
under the present law. Those who believe that
the moral status of the embryo requires our
minimising of embryo selection will argue that
the law must reinforce the HFEA’s stated view
that TT is only ever to be used as a ‘last resort’
procedure.
References
BBC News (2002). Hashmi decision sparks ethics row 22nd
February 2002, accessed at news.bbc.co.uk/hi/english/health/
newsid_1836000/1836827.stm
BBC Television (2003). A baby to save our son, 9th December
2003, BBC1.
Boyle, R. J., & Savulescu, J. (2001). Ethics of using preimplanta-
tion genetic diagnosis to select a stem cell donor for an existing
person. British Medical Journal, 323, 1240 – 1243.
Brownsword, R. (2004). Reproductive opportunities and regula-
tory challenges. Modern Law Review, 67, 304 – 321.
Channel 4 Television (2003). Conversations with the Archbishop,
26th September 2003, Channel 4.
ESHRE PGD Consortium Steering Committee (2002). ESHRE
Preimplantation Genetic Diagnosis Consortium: Data collec-
tion III (May 2001). Human Reproduction, 17, 233 – 246.
ESHRE Taskforce (2003). Taskforce 5: Preimplantation genetic
diagnosis. Human Reproduction, 18, 649 – 651.
Ethics Committee of the Human Fertilisation and Embryology
Authority (2001). Ethical issues in the creation and selection
of preimplantation embryos to produce tissue donors.
Flinter, F. (2001). Preimplantation genetic diagnosis needs to be
tightly regulated. British Medical Journal, 322, 1008 – 1009.
Harris, J. (2000). Rights and reproductive choice. In J. Harris & S.
Holm (Eds.), The future of human reproduction, pp 5 – 37.
Oxford: Clarendon Press.
Holm, S. (2000). Ethical issues in pre-implantation diagnosis. In J.
Harris and S. Holm (Eds.), The future of human reproduction,
pp 176 – 190. Oxford: Clarendon Press.
House of Commons Science and Technology Committee Fourth
Report of Session 2001 – 2002 (2002). Developments in human
genetics and embryology. London: The Stationery Office, para.
25.
Human Fertilisation and Embryology Authority (2001a). Minutes
of the HFEA Meeting of November 29th 2001 accessed at
www.hfea.gov.uk/AboutHFEA/AuthorityMinutes/2001/No-
vember2001.
Human Fertilisation and Embryology Authority (2001b). Press
Release, HFEA to allow tissue typing in conjunction with
preimplantation genetic diagnosis 13th December 2001
accessed at www.hfea.gov.uk/forMedia/archived/
13122001.htm.
Human Fertilisation and Embryology Authority (2002a). Patient
information document, preimplantation diagnosis for single-
gene disorders and HLA (tissue) typing, February 2002, p.3.
Human Fertilisation and Embryology Authority (2002b). Press
Release, HFEA confirms that HLA tissue typing may only take
place when preimplantation genetic diagnosis is required to
avoid a serious genetic disease, 1st August 2002 accessed at
www.hfea.gov.uk/forMedia/pressReleases.htm.
10 S. Bellamy10 S. Bellamy
Hum
Fer
til (
Cam
b) D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y U
nive
rsity
of
Was
hing
ton
on 1
1/06
/14
For
pers
onal
use
onl
y.
Human Fertilisation and Embryology Authority (2004a). Evidence
for the science and technology select committee inquiry on
human reproductive technologies and the law, May 2004,
para.7 accessed at www.hfea.gov.uk/HFEAPublications/Scien-
ceandTechnologySelectCommittee.
Human Fertilisation and Embryology Authority (2004b). Minutes
of the HFEA meeting of July 21st 2004, accessed at
www.hfea.gov.uk/AboutHFEA/AuthorityMinutes/2004/
July2004.
Human Fertilisation and Embryology Authority (2004c). HFEA
Report: Preimplantation tissue typing, para.23, accessed at
www.hfea.gov.uk/AboutHFEA/HFEAPolicy/Preimplantation-
tissuetyping.
Human Fertilisation and Embryology Authority and the Advisory
Committee on Genetic Testing (1999). Consultation document
on preimplantation genetic diagnosis. London: HFEA/ACGT,
para.16.
Human Fertilisation and Embryology Authority and the Human
Genetics Commission (2001). Outcome of the public consultation
on preimplantation genetic diagnosis. London: HFEA/HGC.
Kant, I. (1964). Groundwork of the metaphysics of morals. H. J.
Paton Harper (Trans. Ed.), New York: Harper & Row.
Leather, S. (2003). Lecture: Saviour siblings: is it right to create a
tissue-donor baby? 16th October 2003, Saviour siblings
transcripts, Progress Educational Trust accessed at www.pro-
gress.org.uk/events/PastEventsSSLleather.html
Lewis, C. M., Pinel, T., Whittaker, J. C., & Handyside, A. H.
(2001). Controlling misdiagnosis errors in preimplantation
genetic diagnosis: a comprehensive model encompassing
extrinsic and intrinsic sources of error. Human Reproduction,
16, 43 – 50.
Ouhibi, N., Patton, P. E., Burry, K. A., Olson, S., Lawce, H.,
Gorrill, M. J., et al. (2003). Preimplantation genetic diagnosis:
Does embryo biopsy for PGD compromise clinical outcome?
Fertility and Sterility, 79, 23.
Pattinson, S. D. (2003). Designing donors, Cardiff centre for
ethics, law and society, accessed at www.ccels.cardiff.ac.uk/
issue/pattinson.html.
Pennings, G., Schots, R., & Liebahrs, I. (2002). Opinion – Ethical
considerations on preimplantation genetic diagnosis for HLA
typing to match a future child as a donor of haematopoietic
stem cells to a sibling. Human Reproduction, 17, 534 – 538.
Robertson, J. A. (1994). Children of choice. Princeton: Princeton
University Press.
Sermon, K., Geraedts, J., & Harper, J. (2004). The future plans of
the ESHRE PGD Consortium, accessed at www.eshre.cpm/
ecm/main.asp?lan=46&typ=122&fld=3562.
Strom, C. M., Strom, S., Levine, E., Ginsberg, N., Barton, J., &
Verlinsky, Y. (2000). Obstetric outcomes in 102 pregnancies
after preimplantation genetic diagnosis. American Journal of
Obstetrics and Gynecology, 182, 1629 – 1632.
Van de Velde, H., Georgiou, I., De Rycke, M., Schots, R.,
Sermon, K., Lissens, W., et al. (2004). Novel universal
approach for preimplantation genetic diagnosis of B-thalas-
saemia in combination with HLA matching of embryos.
Human Reproduction, 19, 700 – 708.
Verlinsky, Y., Cohen, J., Munne, S., Gianaroli, L., Simpson, J. L.,
Ferraretti, A. P., et al. (2004). Over a decade of experience
with preimplantation genetic diagnosis: A multicenter report.
Fertility and Sterility, 82, 292 – 294.
Winston, R. M. L., & Hardy, K. (2002). Are we ignoring potential
dangers of in vitro fertilization and related treatments? Nature
Cell Biology and Nature Medicine Fertility, Supplement S14-S18,
S17.
The ethics of tissue typing 11
Hum
Fer
til (
Cam
b) D
ownl
oade
d fr
om in
form
ahea
lthca
re.c
om b
y U
nive
rsity
of
Was
hing
ton
on 1
1/06
/14
For
pers
onal
use
onl
y.
