Policy formation in gamete donation and egg sharing in the UK—a critical appraisal
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Transcript of Policy formation in gamete donation and egg sharing in the UK—a critical appraisal
Social Science & Medicine 59 (2004) 2617–2626
ARTICLE IN PRESS
*Correspond
1484-472794.
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ken.daniels@ca
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doi:10.1016/j.so
Policy formation in gamete donation and egg sharing in theUK—a critical appraisal
Eric Blytha,*, Marilyn Crawshawb, Ken Danielsc
aSchool of Human and Health Sciences, University of Huddersfield, Queensgate, Huddersfield HD1 3DH, UKbDepartment of Social Policy and Social Work, University of York, Heslington, York YO10 5DD, UK
cDepartment of Social Work, University of Canterbury, Christchurch, New Zealand
Available online 17 June 2004
Abstract
This article considers two key policy documents concerning donor-assisted conception in the UK, The British
Fertility Society’s Recommendations for Good Practice on the Screening of Egg and Embryo Donors and the Human
Fertilisation and Embryology Authority’s Guidance for Egg Sharing Arrangements. It discusses both the process and the
evidence used in formulating those sections of the documents which relate to donor anonymity. The paper concludes
that psycho-social policy developments in assisted conception, such as those relating to donor anonymity, should be
subjected to comparable levels of rigour and scrutiny to those that are applied in the formulation of medical and
scientific policies.
r 2004 Elsevier Ltd. All rights reserved.
Keywords: Human fertilisation and embryology authority; British fertility society; Donor anonymity; Egg sharing; UK
Introduction
The Human Fertilisation and Embryology Authority,
the UK’s statutory regulatory body for assisted concep-
tion and embryo research, published the fifth edition of
its Code of Practice in 2001 (HFEA, 2001). While the
fifth edition of the Code of Practice retained much of the
contents of previous editions, it also included new
material, in particular: Guidance for Egg Sharing
Arrangements, previously published by the HFEA as a
stand-alone document in 2000 (HFEA, 2000) and the
British Fertility Society’s (BFS) Recommendations for
Good Practice on the Screening of Egg and Embryo
Donors, included in Annex F: ‘Guidelines from Profes-
sional Organisations’, and which was previously pub-
ing author. Tel.: +44-1484-472457; fax: +44-
esses: [email protected] (E. Blyth),
.uk (M. Crawshaw),
nterbury.ac.nz (K. Daniels).
e front matter r 2004 Elsevier Ltd. All rights reserve
cscimed.2004.04.010
lished in Human Fertility (Aird, Barratt, Murdoch, &
British Fertility Society Committee, 2000).
The British Fertility Society is the principal multi-
professional body in the UK concerned with issues
concerning assisted conception and embryo research.
Because of the Society’s origins as a body for medical
practitioners, this group remains dominant within BFS
both in terms of current membership and influence on
policy. The BFS regularly produces guidelines and other
advice for its members, such as the Recommendations for
Good Practice on the Screening of Egg and Embryo
Donors.While adherence to these is not mandatory, self-
evidently they represent the Society’s views on current
‘best practice’.
In this paper, we consider these documents and the
process that led to their formulation and conclude that
the use and appraisal of existing knowledge was
surprisingly lacking in rigour when formulating evi-
dence-based statements on psycho-social matters. We
discuss possible reasons for that.
Before doing so, we provide a brief overview of the
legislative and regulatory context of gamete donation in
d.
ARTICLE IN PRESSE. Blyth et al. / Social Science & Medicine 59 (2004) 2617–26262618
the UK and outline the status both of the HFEA’s Code
of Practice itself and of professional body guidelines
contained within it.
The legislative and regulatory context of gamete donation
in the UK
In the UK, gamete donation is permitted under the
Human Fertilisation and Embryology Act 1990, subject
to the informed consent of the donor. A sperm donor is
not regarded by law as the legal father of any child
conceived through licensed treatments, although a
woman who gives birth to a child is regarded as the
child’s legal mother, whether or not she is the child’s
genetic mother. Unless the donor and recipient are
already known to each other, the Human Fertilisation
and Embryology Act generally prevents the disclosure of
donor identity to either the recipient[s] or to any
resulting child, although this may change following a
recent Department of Health consultation on donor
anonymity (Department of Health, 2001. For a detailed
discussion see Blyth, 2002; Frith, 2001; McWhinnie,
2001).
Status of HFEA code of practice and professional bodies’
guidelines
The Human Fertilisation and Embryology Act
requires the Human Fertilisation and Embryology
Authority (HFEA) to produce a Code of Practice ‘giving
guidance about the proper conduct of licensed activities’
(HMSO, 1990). The Code of Practice contains provi-
sions that are mandatory as well as ‘guidance and advice
on good practice’ (HFEA, 2001, p. 7). Breaches of the
Act and Code may result in conditions being placed on a
centre’s licence or even withdrawal of a licence.
The 2001 edition of the Code of Practice contains as
appendices additional guidelines drawn up by relevant
professional bodies. It acknowledges that ‘in some
respects these are more far reaching than the HFEA
Code of Practice, covering, for example, areas of
professional standards and training’ (HFEA, 2001,
p. 66). While inclusion of these guidelines does not
mean that any breach would necessarily result in
sanctions being taken, it:
assumes that everybody working in licensed centres
will at all times observe the general standards and
requirements of good professional practice’ and
states that it ‘has tried to ensure that these Guidelines
and its Code are complementary. Where there are
differences, centres should be aware of the difference
between the standards required by the Code of
Practice, and the measures of best practice generally
represented in professional guidelines’ (HFEA, 2001,
p. 66).
The Code of Practice makes no reference to any such
differences of standard between the Code of Practice and
the BFS Recommendations for Good Practice.
A critical analysis
Our approach to critical analysis of the two docu-
ments consists, first, of reviewing original sources—
where cited—and both critiquing the original sources
themselves and their use to support a particular line of
argument. Second, we have drawn on other available
sources of information that were not cited by the BFS or
the HFEA, and which could lead either to modified or
alternative conclusions. Third, we made direct contact
with both BFS and the HFEA requesting further
information about the process through which these
policies were developed.
The British fertility society recommendations for good
practice on the screening of egg and embryo donors
The BFS recommendation regarding donor anonym-
ity states:
Anonymous donation is encouraged in accordance
with sperm donation practice. The implications of
maintaining donor anonymity are different according
to the parties involved. It has been shown that 85%
of potential sperm donors would not enter a sperm
donation programme unless anonymity was main-
tained (Robinson et al., 1991).
The release of identifying information about gamete
donors could therefore severely reduce recruitment to
donor gamete programmes. Donor anonymity is
important for the recipient family as it may protect
them from intrusion from a third party (Snowden
and Snowden, 1998). There is controversy as to
whether to tell children conceived through gamete
donation about their genetic origins. At present, the
majority view favours secrecy. For those children
who are told how they were conceived, withholding
identifying information about the gamete donor
could have potential psychological implications
should they wish to know more information about
their genetic parent. On balance, the evidence is in
favour of retaining donor anonymity and the
recommendations are therefore in accordance with
standard practice which preserves donor anonymity’
(Aird, Barratt, Murdoch, & British Fertility Society
Committee, 2000, p. 162).
ARTICLE IN PRESSE. Blyth et al. / Social Science & Medicine 59 (2004) 2617–2626 2619
The Recommendations make no claim to being a
substantive academic treatise and must, of necessity, be
relatively succinct. However, the evidential basis used to
substantiate the statements made and the conclusions
reached is far from comprehensive. Of the only two cited
empirical sources, the paper by Robinson et al. (1991) is
not contemporary, while both sources are misrepre-
sented. The references to ‘standard practice’ and the
claims relating to psychological well-being of donor
conceived children are not evidenced at all.
Robinson et al. distributed an anonymous question-
naire to egg and semen donors and to recipients of
donated eggs and semen at two UK-assisted conception
units to investigate whether donors would continue to
donate if (a) medical information about them but no
identifying information or (b) medical information
about them and identifying information, were to be
made available to any person aged 18 or over who was
conceived using their gametes. Recipients were also
asked if they intended telling any child born following
the use of donated gametes about the nature of her or
his conception. A high rate of return was established for
all three groups although, as might be expected from the
date of this study, the data relating to oocyte donation
were too limited to draw any conclusions. The sperm
donors were categorised as either ‘established’ (32) or
‘new’ (20), with the latter being defined as ‘new’ donors
who were ‘new recruits but had not yet been accepted by
the programme’ (p. 307). Because the responses of the
two groups were markedly different, Robinson et al.
categorise separately their responses. As Aird et al.
rightly reported, only 15% of the ‘new’ donors said they
would donate if their identity were released to any
person born following use of their sperm. Robinson et al.
concluded that recruitment would be adversely affected
if anonymity was withdrawn (Robinson et al., p. 307).
However, what neither Robinson et al., nor Aird et al.,
discuss is the significance of the response of the
‘established’ donors, 71% of whom would agree to
donate if ‘identifying medical details’ were to be made
available. This omission is an opportunity missed to
examine here or in subsequent research whether
‘established’ donors start on their ‘donor career’, as
did the majority of ‘new’ donors in the study, endorsing
donor anonymity and, if so, what factors may influence
any shift in opinion. Such a critical appraisal of this
study would have allowed a different consideration of its
potential application to policy and practice.
Of the treatment recipients responding to Robinson
et al., 84% agreed that non-identifying medical informa-
tion should be made available and 59% agreed that
identifying information should be made available.
Somewhat paradoxically, 85% of recipients indicated
that they did not intend to tell their child the nature of
their genetic origins. However, this is consistent with the
findings of most other research on the attitudes of
parents of children conceived using donated gametes
(see, for example, Brewaeys, 1996; Brewaeys, Golom-
bok, Naaktgeboren, de Bruyn, & van Hall, 1997; Cook,
Golombok, Bish, & Murray, 1995; Golombok, Cook,
Bish, & Murray, 1995; Golombok et al., 1996; Golom-
bok, Brewaeys, Giavazzi, Guerra, MacCallum, & Rust,
2002; Gottlieb, Lalos, & Lindblad, 2000; Lindblad,
Gottlieb, & Lalos, 2000; McWhinnie, 1996).
In referencing the work of Robert and Elizabeth
Snowden, Aird et al. imply their support for the
maintenance of donor anonymity whereas, in fact, the
Snowdens state quite unambiguously in the cited
reference: ‘It remains anomalous that the identity of
one of the prime actors in this social creation of a family,
the semen provider, is not to be known’ (Snowden &
Snowden, 1998, p. 49). Elsewhere, the Snowdens
endorse this view (see, for example, Snowden, 1996;
Snowden & Snowden, 1997).
The restricted use of the available evidence in both
quantity and critical appraisal by Aird et al. precludes
consideration of some key sources which we now
explore.
In Sweden, where legislation was introduced in 1985
making it possible for donor-conceived individuals to
learn the identity of the donor, there was an initial, but
short-lived, decline in donor recruitment (Daniels &
Lalos, 1995; Gottlieb, 2001). The Australian state of
Victoria removed donor anonymity in 1998 and the
statutory regulatory body reports no evidence that this
has contributed to any problems in donor recruitment
(Infertility Treatment Authority, 2000).
There is also evidence, as Daniels (1998) observes in
his review of studies of semen donors’ views on
anonymity undertaken in Australia between 1983 and
1992, indicating the possibility of recruiting donors who
are willing to be identified. Nicholas & Tyler (1983)
reported that 56% of respondents supported the idea of
a national register; Rowland (1983) found that 60% of
respondents would not mind meeting with the donor-
conceived child at the age of 18; Paul & Durna (1987)
found that 59% would agree to their donor-conceived
children making contact; Daniels (1989) found that 73%
of donors would still provide semen if they could be
traced, and Blood (1992) found 59% did not want
anonymity. Since many of these donors had donated
anonymously, these studies support the findings of
Robinson et al. that even anonymous donors may
subsequently be willing to reveal their identity and/or
provide additional information to their offspring. An
exception to the general trend indicated by these
findings, however, is Condon & Harrison’s (1992) study
showing that 52% of sperm donors in Queensland
would be less willing to donate and 29% would
definitely not donate without anonymity.
UK studies show a similarly contradictory picture.
Sixty-three percent of semen donors surveyed by Cook
ARTICLE IN PRESSE. Blyth et al. / Social Science & Medicine 59 (2004) 2617–26262620
& Golombok (1995) said that they would not donate if
their identity were to be disclosed to anyone conceived.
In a comparative study of sperm donors in two London
clinics, (Daniels, Curson, & Lewis, 1996) 41% of
respondents in one clinic were willing to continue
providing sperm if resulting children could eventually
learn their identity and 18% were unsure. Fifty three per
cent said they would not mind or would welcome
contact from children in the future. Donors in the
second clinic held different views, 63% being generally
unwilling to continue providing sperm should identity-
release be involved. Only 18% were willing to continue
as donors if contact became possible.
Daniels (1998) has suggested that the contradictory
results that are reported may reflect either or both the
types of donors being recruited and the attitudes and
views of the professional staff in the clinics.
Turning to the role of current ‘good practice’ in
determining policy, despite the stated intention of Aird
et al. that: ‘the overwhelming guiding principle must be
the interests of the child’ (Aird et al., 2000, p. 162), the
Recommendations lack adequate reference to the child
welfare professional evidence base. Adoption, and child
and family psychology practice draws on the belief that
children need a healthy sense of identity based on honesty
and trust and that secrets within families are potentially
destructive. (For adoption examples, see Department of
Health, Welsh Office, Home Office, & Lord Chancellor’s
Department, 1993; March, 1995; Sorosky, Baran, &
Pannor, 1984; Triseliotis, 1973, 2000. For family psychol-
ogy see Imber-Black, 1993, 1998; Karpel, 1980.) Indeed, it
could be argued that both the Human Fertilisation and
Embryology Act and the Code of Practice themselves
assume that a donor-conceived individual will have some
knowledge of the nature of her or his conception. The Act
provides for a donor-conceived person to obtain certain
information about his or her conception when reaching
the age of 18 or if planning to marry. Clearly access to
such information presupposes some knowledge (or at
least suspicion) of one’s origins. The Code of Practice
requires centres to take account of ‘a child’s potential
need to know about their origins and whether or not the
prospective parents are prepared for the questions that
may arise while the child is growing up’ (HFEA, 2001,
para 3.14(a), p. 16).
The Donor Conception Network (formerly DI Net-
work), the UK’s largest self-help group providing
support to families with children conceived by gamete
donation with over 600 members at April 2002,
responded to the Recommendations (DC Network,
2001). DC Network, whose members endorse varying
levels of openness in donor conception, reinforced
accepted child welfare practice when they referred to:
y. the profound psychological damage that may be
suffered by children not told by their parents who
later find out the truth and discover that their parents
misled them. Maintaining a secret about these
matters involves a life-long pact between the parents
to deny the children important information about
themselves (DC Network, 2001, p. 49).
While there is no way of knowing how far DC
Network is representative of families created by donor
conception, it drew on its ‘knowledge’ as people directly
affected and stated that ‘living openly with the knowl-
edge of anonymous donor conception within the families
seems to have caused no problems to date’ (DC
Network, 2001, p. 49). They also cited the absence from
the Recommendations of any ‘evidence that children who
know that they have been conceived by donated
gametes, but have no information to identify the donor,
are damaged by this disclosure’ (DC Network, 2001,
p. 49). They have previously argued that the pressing
need in recruitment is to encourage a climate where ‘y.
gamete donation is seen as an open, responsible and
altruistic activity, where donors are rewarded with
esteem and recognition as well as appropriate compen-
sation for expenses incurred. It is important that donors
understand that the decision to donate will have an
important impact on the people who receive the
donation, on anyone born as a result, as well as on the
donors themselves and their own families. Potential
donors should be prepared for and relaxed about the
possibility of being contacted later in life’ (DI Network
News, 1999/2000, p. 2).
The DC Network response suggests that recipients of
donated gametes are less uniformly supportive of donor
anonymity than Aird et al. imply, thus reinforcing the
recent findings of Golombok, Lycett, MacCallum,
Vasanti, and Murray (2002) as well as Rumball and
Adair’s (1999) New Zealand study that showed that
83% of parents of donor-conceived children had told or
intended to tell their child(ren), while the remaining 17%
had decided not to do so.
Finally, it is somewhat surprising that Aird et al. do
not consider in their evidence gathering and appraisal
the ‘interest’ that a donor-conceived individual might
have for knowledge about his or her genetic heritage.
Although the empirical evidence about donor-conceived
individuals’ experiences is still limited, with studies
drawing on relatively small populations to date, what
there is suggests that they (a) would prefer to be told the
truth than be deceived about the nature of their origins
and (b) want information about their donor, including
knowledge of his or her identity (see, for example,
Anonymous, 2002; Cordray, 1999/2000; Donor Con-
ception Support Group of Australia Inc., 1997; Franz &
Allen, 2001; Gollancz, 2001; Hamilton, 2002; Hewitt,
2002; Rose, 2001; Scheib, 2002; Spencer, 2000; Stevens,
2001; Turner & Coyle, 2000).
ARTICLE IN PRESSE. Blyth et al. / Social Science & Medicine 59 (2004) 2617–2626 2621
The BFS reply to DC Network reiterates Aird et al.’s
statement concerning the absence of evidence about the
long-term consequences of egg donation and asserts
that:
Egg donation is fundamentally different from sperm
donation and the arguments for and against anon-
ymity for egg donors are still being considered. Hence
we recommend that both known and anonymous egg
donation should be acceptable practice at the present
time (Murdoch, 2001).
This recommendation is consistent with that adopted
by the International Federation of Fertility Societies
(IFFS, 2001, pp. 10–11) although its child and family
welfare professional membership is rather limited. The
BFS does not indicate in what way(s) it believes egg
donation to be ‘fundamentally different from sperm
donation’, nor does it refer to any of the existing
research evidence that may have been used in reaching
this conclusion.
We are aware of studies indicating that egg donors
appear less likely than sperm donors to demand
anonymity (Braverman, 1993; Schover, Rothmann, &
Collins, 1992). Soderstrom-Anttila (1995) reported that
one third of Finnish egg donors considered that a donor-
conceived child should be able to learn the donor’s
identity. In addition research suggests that a high
proportion of egg donors would continue to donate if
their identity became known to the recipient. Power,
Baber, Abdalla, Kikland, Leonard, and Studd (1990)
found that 87% would do so, while Kirkland, Power,
Burton, Baber, Studd, and Abdalla (1992) found that
63% would do so. In a study of embryo donation,
Soderstrom-Anttila, Foudila, Ripatti, and Siegberg
(1998) found that while half of the female donors were
willing to provide identifying information about them-
selves, only one third of donor couples did so, because of
a reluctance on the part of the male partner to provide
identifying information.
However, while Aird et al. acknowledge that ‘little is
known about the long-term outcomesy’ in respect of
egg donation (Aird et al., 2000, p. 163), they did not
extend this observation to sperm donation. Our own
review of the existing, albeit limited, research suggests
that, on balance, a recommendation of a move towards
openness would be indicated for all groups.
The human fertilisation and embryology authority
guidance for egg sharing arrangements
Following the HFEA’s consultation on the with-
drawal of payment to gamete donors (HFEA, 1998a),
the HFEA announced that payment to donors would
continue to be allowed and that egg sharing would be
‘regulated and not banned’ (HFEA, 1998b). Work then
commenced on producing the Guidance for Egg Sharing
Arrangements and this was published by the HFEA
following consultation with the British Fertility Society
and the Royal College of Obstetricians and Gynaecol-
ogists (HFEA, 2000, 2001). For the purposes of this
paper, we are concerned only with the HFEA’s
proposals concerning information about donors’ and
recipients’ treatment.
In the Guidance, the HFEA identifies the need for ‘a
statement confirming that y in an anonymous egg
sharing arrangement, neither the egg provider nor the
egg recipient(s) will be made aware of the outcome of the
other’s treatment’ (HFEA, 2001, pp. 55–56).
While this Guidance may reflect existing practice in
some, but not all, centres already providing egg sharing,
such a restriction on information is neither mandated by
the Human Fertilisation and Embryology Act, nor by
any previous edition of the HFEA’s Code of Practice.
Indeed it runs contrary to practice in those centres which
have been responding to the requests of some donors for
information about the outcomes of their donation
(Sheila Pike: Chair, British Infertility Counselling
Association, personal communication, 6 December
2002).
The Guidance itself does not explain the reasoning
behind the recommendation to restrict information
about treatment outcomes, although this had evidently
been of concern to the HFEA for some time:
the patient-donor may worry about the outcome for
the recipient and whether or not she became
pregnant. These concerns may increase if she fails
to conceive and then must cope not only with being
childless, but also with the possibility that another
woman may be bringing up a child which is
genetically hers (HFEA, 1998a, 5.9).
Under such circumstances, superficially, at least, it
might seem preferable for the donor never to know.
However, available evidence suggests that some sperm
and egg donors do wish to have information concerning
the outcomes of their donation (Bromwich, 1990;
Daniels, 1998; Fielding, Handley, Duqueno, Weaver,
& Lui, 1998; Human Fertilisation and Embryology
Authority (HFEA), 1994; Kalfoglou & Gittelsohn, 2000;
Rosenberg & Epstein, 1995; Sauer, Rodi, Scrooc,
Bustillo, & Buster, 1988; Schover, Collins, Quigley,
Blankstein, & Kanoti, 1991; Schover et al., 1992;
Soderstrom-Anttila, 1995; Soderstrom-Anttila et al.,
1998).
Furthermore, an egg donor is more likely than a
sperm donor to be known to a recipient, as a friend or
family member (Murray & Golombok, 2000) and where
donation is not anonymous the donor is more than
likely to become aware of the outcome of treatment. The
picture is nevertheless far from clear. We are aware of
ARTICLE IN PRESSE. Blyth et al. / Social Science & Medicine 59 (2004) 2617–26262622
three reported studies specifically of the views of egg
share donors (Ahuja, Simons, Mostyn, & Bowen-
Simpkins, 1998; Blyth, 2003; Rapport, 2003)—although
none of these was available in advance of publication of
the HFEA’s guidance on egg sharing. In the studies
conducted by Ahuja et al. and Rapport, a minority of
donors wished to learn the outcome of the recipient’s
treatment, while in Blyth’s study a majority of donors
wished to do so. However, a policy that precludes
disclosure of such information disadvantages those who
do wish to have it and is consistent with Daniels’ (1998)
suggestion that much clinical practice in respect of
donors has been based on paternalism, itself informed
by assumptions about the ‘best interest’ of donors.
In response to a direct enquiry, the HFEA advised
that the origins of the recommendation were to be found
in responses to the HFEA Consultation on the Imple-
mentation of Withdrawal of Payments to Donors (HFEA,
1998a) among which 19 respondents (from a total of 181
responses) made the point that: ‘the egg provider would
suffer emotional problems if her treatment is unsuccess-
ful. It was felt that these problems might be aggravated
still further if the egg provider was to discover that the
egg recipient had been successful. The issue of revealing
outcomes also came up under the discussions surround-
ing implications counselling at the first egg sharing
meeting. It was agreed that particular emphasis should
be given to discussing the implications of knowing or
not knowing the outcome of the other couple’s
treatmenty . It would be fair to say that if at this early
stage of treatment a request was made for the centre to
consider revealing the outcome to one or other of the
egg sharing couples they could do so’ (HFEA personal
communication, 2 August 2001). However, neither the
original Guidelines nor the Code of Practice refer to the
latter option, so it is not clear when this became part of
HFEA thinking or, indeed, how the HFEA intended to
convey this information to centres.
In Victoria (Australia) the donor’s interest in learning
the outcome of her or his donation is given legal
recognition under provisions of the Infertility Treatment
Act 1995 (s 82) to establish a Donor Treatment
Procedure Information Register maintained by the state
statutory licensing body, the Infertility Treatment
Authority. Similar legitimation of a donor’s interest in
learning the outcome of his or donation was acknowl-
edged in the draft New Zealand Assisted Human
Reproduction Bill (New Zealand Government, 1998).
While we recognise that there are differences between
egg donation and egg sharing (and further differences
may emerge as increased knowledge about egg sharing
develops), it would appear likely that at least some of
those involved in an egg sharing arrangement, including
the donor-conceived individual, may find that their
preference is to know the outcome for the other party.
Furthermore, it may also be the case that donors who do
not wish to be identified at the time of donation may
later change their mind—as suggested by Robinson
et al.’s (1991) study. Under current HFEA Guidance,
this would not be possible.
We note that in permitting egg-sharing to continue,
the HFEA refrained from ‘giv[ing] the practice its ethical
approval’ (HFEA, 1999). However, the HFEA must
have believed it possible for a woman to give her
informed consent to egg sharing—and indeed, the
Guidance notes that:
Certain requirements such as consent yy.. will
require special attention for egg sharing arrange-
ments (HFEA, 2000).
Yet, this sits uneasily with the HFEA’s decision that
the woman needs protecting from the consequences of
her decision to participate in an egg sharing scheme. If
research or clinical evidence subsequently reveals that
donors are invariably harmed by knowledge of the
outcome of the donation if this is sought, then perhaps
the policy question should be about egg sharing as a
matter of principle rather than whether to conceal its
outcome.
The Guidelines imply that knowledge of the possible
existence of children born as a result of egg sharing, and
the possible existence of half-siblings for any children of
the donor or recipient—but not the absolute knowledge
either way—may be problematic, or at least something
about which participants in egg sharing may require
counselling. Yet such uncertainty is an artefact of the
HFEA’s making. Individuals who have donated and
those whose children are conceived through egg-sharing
will be unable to tell any children they may have whether
or not they have any half-siblings. Some young people,
whether the children of donors or recipients, will grow
up in the knowledge that they may have one or more
half-siblings but never knowing for sure, knowledge that
may have uncertain psychological outcomes.
Egg sharing remains a controversial procedure both in
the UK and globally, primarily because of concerns
about its quasi-commercial status, the extent to which
women might be coerced into sharing their eggs since
this provides their only option for funding their own
treatment, the lack of information about treatment
outcomes and the psycho-social implications for donors,
recipients (and any partner) and children who may be
conceived.
Discussion
In both the Guidance for Egg Sharing Arrangements
and the Recommendations for Good Practice on the
Screening of Egg and Embryo Donors the dominant
discourse is around the medical and technical aspects of
ARTICLE IN PRESSE. Blyth et al. / Social Science & Medicine 59 (2004) 2617–2626 2623
treatment, encapsulating current views on ‘best prac-
tice’. These aspects were discussed (and in the case of the
BFS Recommendations, referenced) relatively inten-
sively. The BFS also reported that the Recommendations
‘concentrated very much on the screening of donors
rather than on ‘‘anonymity of donors’’ or ‘‘secrecy in the
family’’y . It was never considered that it was a
significant remit of this paper to consider in depth the
question of ‘‘secrecy within the family’’ so this topic was
not referenced’ (BFS personal communication 25 July
2001).
In contrast, psycho-social professional ‘best practice’,
psycho-social aspects of treatment and its outcomes for
those who are affected directly are marginalized. We
suggest that such marginalisation is an almost inevitable
outcome of the medical hegemony that has dominated,
and continues to dominate, policy and practice in
assisted conception, as manifest in such areas as the
lack of development of ‘preparation for Parenthood’
services for prospective parents using donated gametes
(Crawshaw, 2003).
While detailed and careful scrutiny of the medical and
technical aspects of treatments and their outcomes are
crucial, policy developments will be necessarily hindered
by the lack of similarly detailed scrutiny of their psycho-
social implications. We argue that it is the lack of
attention to developing adequate standards of scrutiny
in this arena that has allowed the medically and
scientifically dominated BFS (and to a lesser extent the
HFEA) to consider it acceptable to make policy
statements about psycho-social matters within a medical
and scientific policy document without rigorous analysis
of available evidence from research, practice and from
those directly affected, and without recognising the
limits of their own competence to undertake such a task.
It appears to be the lack of attention to the central
importance of psycho-social issues in treatment and
outcomes that allowed the HFEA to adopt the BFS and
RCOG as its only key partners in developing its
Guidance, despite the fact that much of that Guidance
referred to non-scientific and non-medical practices.
The outcome of successful assisted conception treat-
ments is the formation of a family as well as of a
physically healthy child. The healthy functioning of that
family and the individuals within it warrants more
serious and measured consideration and improved
collaboration within interests beyond the medical and
scientific community than it received in this instance.
Conclusion
In this paper, we have questioned the incomplete
evidence base that underlines policy regarding access to
information in donor conception and egg sharing
promoted by the BFS and HFEA. Additionally, we have
suggested that research and accepted practice in the field
of child development and family therapy together with
the experiences of some of those directly affected, indicate
that secrets within relationships are generally to be
discouraged as potentially harmful, although space has
precluded a detailed exploration of this literature in this
paper. Appraisal of these additional sources of evidence,
together with recognition of the current limitations on
empirical data regarding psychosocial perspectives in
donor-assisted conception (in contrast to biomedical
evidence), should encourage a more circumspect ap-
proach to the evidential basis of policy formulation.
We hope that our discussion of the way in which
influential organisations such as the BFS and the HFEA
undertake policy formulation will contribute to further
discussion about the transparency, democratisation and
appropriateness of such decision-making processes. We
have argued that the BFS Recommendations and the
HFEA Guidance are a backward step in the development
of a more rigorous approach to policy formation. We
welcomed the recent consultation initiated by the Depart-
ment of Health’s Providing Information about Gamete or
Embryo Donors (Department of Health, 2001) which
provided an opportunity for a more reasoned debate
about these issues and, we hope, will ensure a far greater
emphasis on the needs and interests of donor-conceived
individuals in future policy making. This presents an
opportunity for the high standards of scrutiny that are
applied to the development of medical and scientific
policies to come to bear on the development of policy in
the equally crucially area of psycho-social policy.
Acknowledgements
The authors wish to acknowledge the assistance of the
British Fertility Society and the Human Fertilisation
and Embryology Authority in providing information
about the policy formulation process in their respective
organisations.
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