Social Science & Medicine 59 (2004) 2617–2626

ARTICLE IN PRESS

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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: e.d.blyth@hud.ac.uk (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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