DONATED EMBRYOS

The use of donated embryos is just one of the many options which is now available in assisted conception, alongside egg donation, sperm donation and surrogacy. Separate booklets on these donor assisted treatments are available from the IFC Resource Centre. Embryo donation could be described as a perfect form of 'biological' adoption which avoids many of the availability and legal difficulties which adoption presents.

This booklet has been written to help those considering treatment with embryo donation and those who might be considering donating embryos which have been generated' as a result of In Vitro Fertilisation (IVF) and which are surplus to the needs of the couples, and who now wish to donate them to another couple.

Why is there a need for embryo donation?

In some couples the reason why they are unable to have children is because there are:-

- Known problems on both the male and female side which make it impossible to have a child/children from their own eggs and sperm.

- Unknown causes which nevertheless also mean that there is some form of incomparability between the sperm and the eggs.

- There are genetic problems which would mean that there is a high risk that any resulting children would have a high chance of showing severe abnormalities (e.g. Cystic Fibrosis, Huntington's chorea etc.).

Clinics might not normally consider requests which are from social reasons - more convenient, single parents etc.

Where do donor embryos come from ?

· By creating embryos from donated eggs and donated sperm. There are often very long waiting lists for donated eggs.

· Embryos which already exist, which have resulted from fertility treatment for couples by IVF, and who no longer need them. These embryos have been frozen and are stored in liquid nitrogen (- 1 96' C).

Frozen Embryos - UK law (some countries have similar regulations – others stricter or none

Embryos can be frozen and stored in liquid nitrogen almost indefinitely. The technology has reached the point when the majority of embryos will survive the freezing and thawing processes (usually as high as 80%). You should check with your own clinic how successful their freezing/thawing process is. Not all clinics offer freezing and some may not achieve the maxi_ mum survival rates.

The UK law allows embryos to be stored for 5 years with an extension to IO years in certain circumstances and longer where storage is necessary because of chemo or radiotherapy for cancer. Some countries have much stricter regulations and others no limit at all.

At the end of the storage interval the couple who 'own' the embryos must decide what should be done to the embryos:

- Continue cryopreservation if the limit allows.

- Donate the embryos to another couple.

- Donate the embryos for research - only research up to 14 days is permitted under the UK law and then only research which has been authorized and licensed by the licensing authority.

Implications for the Donors ?

- How do they feel about the real possibility that there may be other children who have resulted from their own genetic material - their embryos? Many have found this difficult and fear looking on children in their area and asking themselves "is that one of ours?" or "that child looks very much like our own!".

Sometimes, when this has been a real issue, they have agreed to donate to another couple after the embryos have been transferred to another clinic, well away from their own locality. That is allowed and arrangements can be made on their behalf by the counsellors and medical secretaries.

- Are they quite sure they will not want them for siblings (brothers and sisters) for their existing children later on?

They must be quite satisfied that they can live with their decision. It will certainly bring a great deal of happiness much hope to other couples and will always be appreciated. They can be assured that the embryos will only be donated to couples who have a genuine and desperate need for them.

Donors can change their minds right up to the time that the embryos are used (transferred to the uterus of another woman). In practice couples who have made the decision to donate their embryos would consider that they have relinquished all interests and rights to those embryos when they sign the consent forms.

How are donors selected? Is there any screening?

Couples are naturally concerned about the way in which donors are selected and screened. The donors are couples who have experienced infertility, who wish to help other childless couples, and who want their surplus embryos to have a chance of life.

They must be of normal intelligence, healthy, and with no history of severe physical, mental or genetic illness. They are required to undergo further medical examinations and details are asked about their medical history (going back several generations if possible): has any member of the family died young? - is there any history of hereditary disease? - do they know of any reason which would preclude them from being donors?

Donors should be screened for sexually transmitted diseases such as HIV. The embryos can only be used if the donors is shown to be free from the AIDS antibodies after a repeat test six months after the embryos were created.

Blood is also tested for hepatitis and is screened for CMV status,  chromosomal abnormalities (karyotyping), cystic fibrosis, VDRL etc.

Payment and expenses

Donors are not paid for the donation only proper expenses are allowed. Clinics treating patients with donor gametes or embryos must be licensed by the Human Embryology & Embryology Authority and must comply with their strict guidelines.

Risks

The risks of an abnormality resulting from the use of donor embryos must be very low - after all we don't submit our partners to a lengthy questionnaire about their medical history, screen each others blood etc.

Donors have to be aware that they do have a responsibility towards any future child. The child would have the right to sue the donors, if they deliberately failed to disclose relevant medical histories, and the child inherited a genetic abnormality.

If the recipients are still worried then tests can be carried out during early pregnancy - GP's and those responsible for the obstetric care will be able to advise couples about the risks and the advisability of these tests. Remember that the embryos will have come form women who are below the age of 36 where the risk of Down’s is low. Remember that it is the age of the donor woman that matter not the age of the recipient woman

Matching donors to recipients ?

Donors and recipients will be asked for details of their physical characteristics so that they can be matched carefully as possible. These details will include height, weight or build, hair colour, complexion, colour of eyes, skin colour (race) and blood groups.

Other factors can be taken into account if you feel that they are important - e.g. religion, caste, facial features etc. which may be particularly important for certain ethnic groups. Clinics do try their very best to provide an acceptable match and will try very hard to keep wishes of the recipient couple in mind - it may however increase the time required and a perfect match may not always be possible.

There is no reason why a child/children born as a result of donor embryos should appear to other people to be out of character with the recipient couple. Many couples who have had children as a result of using donor eggs, sperm, or embryos have been surprised, and sometimes embarrassed, when friends and relatives say "doesn't he/she look like their dad or like their mum" - they smile and say to themselves 'we know something you don't know!'. This is not really surprising - after all we recognize likenesses in children (even at a very young age) by expressions and behavioral characteristics which they copy from their parents at a very early stage - the way they laugh, smile, cough, walk, use their eyes etc., all copied from their parents. Even adopted children seem to grow like their adopted parents even though there can be no genetic reason why they should.

Confidentiality & Anonymity

Clinics offering treatment with donor embryos must observe very strict rules of confidentiality. There is no reason why a GP or referring doctor need know the fact that treatment has been by embryo donation, although it is probable that they would know if there is a proper doctor/patient relationship. In any case they are bound by rules of confidentiality. Patients are in

control of who has access to information in their clinical notes.

At the moment we can say with confidence that the identity of donors would not be disclosed to anyone, so you would not be able to learn their identity nor they know about you. However we have to qualify that statement because the Human Fertilisation and Embryology Act passed by Parliament (1990) established a statutory authority (the Human Fertilisation and Embryology Authority) which will regulates certain forms of infertility treatment including the use of donor sperm, eggs, or embryos: -

Section 29 requires the Authority to keep information about donors and persons to whom treatment services are provided, and regulates circumstances under which information may be disclosed. A person aged 18 or over may on application be given information to be specified in regulations by the Authority. Certain information may also be provided to a person under the age of 18 who proposes to marry. This kind of information held by the Authority is exempt from the subject access provisions of the Data Protection Act 1984.

This means, if my interpretation is correct, that only the child shall have access to the information except, under Section 31, where there may be reasons for the registrars general to need the information say to prevent brother marrying sister. Section 31 requires certain information to be provided to the Registrars General.

The Government have indicated that it is not their intention that the information referred to in section 29 would include information leading to the identity of the donor. Furthermore the term "specified by regulations" means that regulations can be changed without a further Bill being placed before Parliament and although what is enacted in this Act could be changed by a future governments it would require debate in both houses and cannot be retrospective.

It could only be made retrospective if a new Bill was presented to Parliament.

The child might only consult the authority if he or she knew the facts about their conception. The child does have the right to seek information about their conception, but it is doubtful whether children who had not been told by their parents would know that they had this right. We will not know how these rights will be implemented until 2007 when the first children (under regulations of the 1990 Act) will be 16. See paragraph on "Telling the child". An amendment to include the words "by donor" on the registration certificate was defeated at the Committee Stage in the House of Lords and in the House of Commons. Such a requirement would have only marked the child out as "being different" and serve no useful purpose.

The Legal Status of the Child.

Under the 1990 Act the legal situation is now clearly defined. Section 27 sets out who is to be treated as the father. When the mother of the child (Section 26) conceives, as a result of the use of donated embryos, her husband is to be treated in law as the father of the child, unless he can show that he did not consent to the treatment. The man from whom the sperm came, and the woman who produced the eggs are not to be treated as the father or mother if the requirement of the Act in relation to consent were complied with.

The Act now clarifies the legal situation and removes the uncertainties which many couples have faced in the past. Registration is now clearly in the name of the mother and father, with no mention of donor assisted treatment.

Telling The Child or Not ?

We have already considered the question of anonymity and the Act (1990) which might have a direct influence on whether or not couples would want to tell a child that he or she was conceived as a result of donor embryos. As the law stands, unless the parents reveal this to their child, there is no reason for him or her ever to know that he or she was conceived as a result of the generosity of donors.

Some people would argue that we all need to know our genetic backgrounds, that it is an important part of our heritage. They would draw a parallel with adoption where the child has the right at eighteen to know and trace its genetic parents. They would go on to argue that parents must tell their children the facts about their conception.

Others would say that it must be left up to the individual couples, and that it is not similar to adoption where there may be all sorts of unhappy, tragic, even violent reasons why a child was placed for adoption. A couple who have decided to have a child as a result of the generosity of embryo donors is doing so with each others support and through an act of love. It is a positive decision, not a negative one. They move forward in a positive way using the gift which may make it possible for them to have their own child.

Most couples will have some idea in their minds as to how they will cope with the situation of both accepting donating embryos or donating embryos. They will need to have sufficient time to explore all the implications for themselves donors and recipients may find it helpful to discuss the matter further with a counsellor who should be available at any time in the future..

Many will say that they "probably will tell the child" or that they will "probably not" - leaving the door open. If you decide not to tell the child then you should be aware that secrets can be difficult to hold and you will need to prepare yourself for that course of action and perhaps be prepared to change your mind as the child develops. A child would be very hurt to discover the facts by accident.

Much will depend on how many other members of your family know the facts - the more who know, the more difficult it will be to hold that secret. In adoption 'parents' have no choice as the child has the right to know the facts and, if they wish, to trace the birth mother. In any donor assisted treatments the child does not have the right to the identity of the donor and this might influence their decision whether to be open or not. They will need to think very carefully about their attitudes because what is said cannot be unsaid. However you only have to tell the truth once. Experience suggests that most couples who have a child by egg donation will tell the child but the majority of couples who have a child by sperm donation do not.

When to tell, and how to tell?

Nobody can tell you exactly how and when you might tell a child about his or her conception. But if you do decide to tell your child you might find it easier to do so in stages starting with a simple explanation which emphasized that you wanted the child so much that you needed some help from the doctors, going on later on to provide more details children in any case don't want all the details at once and you would not want to talk about sperm and eggs and embryos until the child is old enough to understand the basic facts of conception. A happy story at an early stage is more likely to be accepted by the child as neither so special that they brag about it or so horrendous that they are ashamed about it. What you would want to emphasize is that you needed this help because you wanted him or her so much.

There is a lovely story told to me by a mum who had a child by IVF. She had explained to him, at the age of three and a half, that babies are born when mummies and daddies have special cuddles - but this doesn't always work. They went to see a doctor who sent them to a special hospital where they had 'to make you in a little dish, and when you were just a tiny embryo they popped you back into mummy's tummy.

Little Christopher (my name for him) found this very interesting.

Next week they went shopping at Tescos (a supermarket) and there coming down one of the gangways was a lady with a baby in a pram.

'Oh' cries Christopher 'was your baby made in your tummy of in a dish ?'

'In my tummy of course' replied the somewhat alarmed mother!

'Oh, that very nice' replied Christopher 'because I was made in a dish - bye bye!'

THE IMPLICATIONS OF EMBRYO DONATION NEED TO BE CLEARLY UNDERSTOOD BY ALL PARTIES

DONORS: Those who decide to donate embryos to another couple must:

ü       Relinquish all rights to those embryos and be able to give fully informed consent to that decision.

ü       They will need to consider the implications of donating genetic material which could eventually be a sibling to their own children;

ü       They will need to consider the unknown potential reactions of any existing children.

ü       Psychological Counseling should be available to help them explore all the implications of embryo donation[1].

ü       They will need to explore their expectations and/or the availability for contact with potential offspring that result from the embryo donation.

ü       Embryo donors must provide a medical and genetic history, be willing to submit to blood tests for infectious diseases and blood typing and other minimal screening criteria laid down by ASRM[2]. The buying or selling of embryos is unethical

ü       They will need to fully understand the financial structure which apply in embryo donation.

ü       ASRM considers that payment for embryos is unethical but that expenses incurred in initiating and fulfilling treatment by embryo donation can be made.

ü       Those who participate in embryo donation programs should be assured of confidentiality insofar as local statutes permit⁹.

ü       Payment and expenses The Guidelines of ASRM make it clear that donors should receive no compensation for the donation other than reimbursement for specific expenses (e.g. obligatory blood tests etc)⁹..

POTENTIAL RECIPIENTS: Recipients of donated embryos should also receive psychological counseling and assessment[3]. They will need to consider mareceiving embryos that have no genetic link to themselves and:

ü       Feelings about their medical condition which made the use of donor embryos necessary

ü       The impact of successful treatment during pregnancy. This includes discussing such issues and whether to be open with the child(ren) about their genetic origins or to keep the secret.

ü        The potential for multiple pregnancies.

ü       The impact of parenthood at, perhaps, an older age.

ü       The woman who carries the child will have a significant biological contribution to the child by virtue of the pregnancy and birth experience and would be defined as the mother.  The woman and husband/partner (if any) or both partners may experience ‘nonbiological parenting issues’¹⁰.

ü       The impact of treatment failure with the subsequent grieving process. Failure is always difficult to cope with. Hopes dashed, perhaps after a last chance, can be particularly difficult to accept.

ü       In the case of successful donation where the parties are know to each other (i.e. within families or friends) the unique relationship and dynamics that ensue must be carefully explored.

ü       Matching potential donors and recipients:  Donors and recipients may  wish that any child born as a result of embryo donation would not appear out of character with recipient couple.  Obvious characteristic such as height, weightt, build, complexion, hair color, ethnicity, religion, blood group will need to be taken into account.  Many recipients might want this list to be considerably extended to take into account social skills (musical/artistic/sporting ability) as well as intelligence, interests etc. Matching donors within a specific locality or from within the existing pool of potential patients of an IVF facility might be difficult. There is no reason why a child born from embryo donation should appear out of character with the recipient patients. Many couples who have had children by embryo donation[4] have been surprised and show a myriad of reactions, including discomfort, by the comment from friends and relatives when they say “doesn’t he/she look just like their mom or dad!”  The reaction to that should be one of gratitude even though they might smile and say to themselves “I know something you don’t know”. Such remarks are not surprising and may set into motion a variety of feelings.

ü       Has there been adequate screening? Health (HIV, physical, mental & genetic disorders? Chromosomal abnormities), intelligence, social background etc.

ü       What are the motives of the donors? Were they paid?

ü      Must they or should they tell the child born as a result of embryo donation[5] – should existing siblings know?

ü      A National database will enable a more effective use of those embryos that any IVF center might have in storage.  Centers might well be able to make a suitable match from their own patient pool but would often find it easier and more satisfactory for the recipients if the pool of availability is extended across the nation.  A register proposed by N.E.D.O.N would make this more possible and encourage more potential donors to consider this option for their ‘spare’ embryos

.

ü       Confidentiality and Anonymity: IVF clinics offering treatment with donor embryos should observe strict confidentiality.  Will they or the child(ren) born as a result of embryo donation have the right at any stage to know the identity of the donors..  Unless the treatment is between know individuals (e.g. family or friends) donors and recipients would have no identifying information about each other. The register of potential donors held by N.E.D.O.would contain no identifying information – such information must be held by the treatment centers as future resources (medical and otherwise) for the potential offspring⁷.

(2.4) WELFARE OF THE CHILD

Many factors need to be taken into consideration in this assessment including who would be legally responsible for any child brought about by Assisted Reproductive Medicine, particularly where such treatments involve the use of donated gametes or embryos[6]. The following points need to be considered:

ü       A child’s need to know about their origins and whether the parent(s) is prepared for the questions that may arise while the child is growing up.

ü       The possible attitudes of other members of the family towards the child and towards their status in the family.

ü       The implications for the welfare of the child if the donor is personally known within the child’s family or circle of friends.

ü       An explanation of who will be the legal parents of any child born as a result of donated gametes or embryos.

ü       The ages of recipient(s) and likely future ability to look after the child.

ü       The recipient’s ability to provide a stable and supportive environment.

ü       The recipient’s future health and ability to look after or provide for a child’s needs.

ü       The effect of a new baby or babies upon any existing child(ren) of the recipients family.

ü       The benefits or harm, for the child(ren) of the recipients family and the children of embryo donors and their family, from contact or lack of contact with one another.