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Anonymous or non-anonymous egg donation? Pros and cons explained

Dr Rocio Núñez Calonge
Scientific Advisor at UR Vistahermosa , PreGen (UR Vistahermosa)

Category:
Advanced Maternal Age, Donor Eggs

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From this video you will find out:
  • What number of egg donation cycles are performed per year in Spain?
  • What are the legal aspects of egg donation in Spain?
  • What does the selection of the donor process look like, and what tests are performed on the egg donors?
  • How does Fenomatch technology work?
  • What do patients think about the egg donor’s anonymity?

What is the best option: non-anonymous, anonymous egg donor?

During this webinar, Dr Rocío Núñez, Scientific Advisor at Vistahermosa UR Group (International Reproduction Unit) discussed the pros and cons of selecting an anonymous vs. non-anonymous egg donor and the importance of selecting a donor. The event was hosted by Sheila Lamb, DEIVF, Mum & Author of the Fertility series and Infertility Doesn’t Care About Ethnicity.

The webinar session started with Sheila’s Lamb introduction. Sheila became a mum through egg donation after 6 years of the infertility journey at a Spanish clinic when she was 47. Sheila’s daughter is now 11 years old. Sheila emphasized that she was worried about having a child-through-egg donation and wondered if she would bond with the child and love that child, and it turned out that she now feels as if her daughter had been born with her own eggs and couldn’t imagine life without her. Dealing with infertility, doing IVFs, having a miscarriage and then looking for a donation to have a family was emotionally hard and lonely. Back then, there weren’t many people sharing their stories, and it was hard to find someone who had used an egg donor to have a child. It is quite different now, there is a lot more information, and a lot more people share their stories as a recipient’s parents, a donor, and a donor-conceived person.

Sheila highly recommended connecting with people who are open and willing to talk about their journey and raising awareness of infertility and loss to reduce the taboo and shame on these subjects. Sheila is an author of 5 books that are collections of IVF, pregnancy loss and baby loss and who are now pregnant after infertility loss.

Later on, Dr Rocío Núñez started her presentation by showing the data published by the European Society Of Human Reproduction and Embryology (ESHRE) that revealed that around half of egg donation cycles were carried out in Spain. Dr Núñez emphasized that the most controversial issue in egg donation is anonymity or non-anonymity. It’s very diverse in the different countries in Europe and worldwide, in some countries’ anonymity is mandatory, in others, only non-anonymous donors are allowed, and there are also some countries where the system is mixed.

Although most donation treatments in the world are anonymous, a growing number of countries are questioning the morality of anonymity. The laws are being enacted to allow children to identify the donors, and in this sense, a Council of Europe published a draft for changing the legislation on a European scale racing with legal, ethical and clinical problems.

In Spain, oocyte donation is anonymous, and through the years, the number of egg donation cycles has increased. According to data published by the Spanish registers through The Spanish Fertility Society in 2019, there were 35728 donation cycles performed in Spain and more than 10000 cycles were done abroad. In Spain, these treatments are well regulated and well managed, both for patients and for donors. The law established that only centres authorized by the competent health authorities and the ones following strict control of the confidentiality of donor data will be able to participate in the donor selection.

Donor selection

The law is very strict, and the donors undergo a general assessment, and there are several tests they need to go through.

General selection:

  • young women (<35 years old)
  • healthy women
  • medical and family background
  • psychological assessment

Tests:

  • ovarian reserve
  • general analysis (serological and microbiological tests)
  • genetic
  • CGT panel (recessive diseases)

Moreover, at Vistahermosa centres, there is also a DNA donor bank just in case there would be a need to locate the donor in the future. A new technology called Fenomatch is also available. It helps to match a donor phenotypically, which enables to guarantee the compatibility between the donor and the recipient. It also matches the biophysical and biometric characteristics. A donor and a recipient will be informed of the results, in accordance with the provisions of law. This information must be as complete as possible.

Survey on anonymity

What do patients think about anonymity? There was a survey performed by clinics in Spain where they asked patients who underwent an egg donation cycle, and 66 patients anonymously completed a questionnaire. They were asked about their socio-demographic characteristics, their opinions concerning secrecy or disclosure of the method of conception toward the child, the type of information the child should have access to – identifying or non-identifying – and whether they intend to inform their child and relatives about his/her origin.

The results showed that 82% of homosexual couples considered telling their children that they have been conceived with gamete donation, whereas 61% of heterosexual couples considered not telling their children that they were conceived through gamete donation. The patients didn’t want to know the identity of the donor, they didn’t consider that knowledge about the origin of the gametes is important to a child. They think that the child doesn’t need to know the donor’s identity.

To sum up, most patients who undergo treatment with donated gametes in Spain consider that their children shouldn’t know the identity of the donor. The problem of anonymity versus disclosure ultimately is an ethical issue.

Ethical factors

From an ethical point of view, the main criticisms of the anonymity of gamete donation focus on the interest of children conceived by gamete donation and the right of the child to know their biological origins. On the other hand, people who support anonymity say that this practice respects the interests of the donor and their privacy and parents’ wishes in determining the best interest of the child.

From an ethical point of view, in addition to the children born by gamete donation, other people should be taken into consideration, including the patient, the couple, but also family, friends, society, donors and the medical team. Spanish Fertility Society convened a focus group with key figures in ethics, law, psychology and reproductive medicine to identify the scientific, psychological, legal and ethical arguments supporting the anonymous gamete donation. When we analyse the ethical justifications, which back up the right to know more about genetic origins based mainly on the defence of health and the right to identity, but also considering other values that affect different participants in the donation. Each value as a part of this issue has been analysed, facing the extremes of the situations to reach an intermediate position and always keeping in mind that the child’s welfare requirements are a prime concern.

The moral dilemma arises when trying to determine which is the best option, anonymity or non-anonymity, without considering all the values which may be harmed by choosing between one of the extremes and not just those which may impact the offspring.

From an ethical perspective, the following values were examined:

  • the health of a baby born using donated gametes
  • sense of identity
  • the autonomy of the parents
  • genetic inheritance
  • donor confidentiality
  • justice
  • responsibility
  • quality of donation
  • economic value

For each value, there are arguments to defend each string of the situation. The first value is the health of those who were using donated gametes.

In favour of suppressing anonymity:

  • the right to have access to family history, to know health risks, take preventive measures and thus have the better diagnostic capability (Freeman, 2012)

On the other hand, in favour of anonymity:

  • people conceived by the donor may share cultural and behavioural values such as lifestyle and nutritional habits, which are important for their medical history and future health (Melo, 2004)
  • Spanish policy explicitly indicates that donor-conceived individuals should have access to non-identifiable information about the donor, including medical information

Anonymous donation is not incompatible with offering relevant medical information. Therefore, anonymity policies do not seem to frustrate the health interests of these people.

The next thing described was a sense of identity, and in favour of suppressing anonymity:

  • individuals require real data about their biological history to develop an adequate personal identity (Ravitsky, 2014)
  • knowing one’s genetic origins is an important component of understanding oneself (Blith, 2004)

On the other hand, in favour of anonymity:

  • although children have the right to an identity, they do not have the right to a ‘particular type of identity (Allen, 1996)
  • the development of the personal identity depends on the interpersonal relationship with others

Revealing the origins of children born by gamete donation may be considered as a moral obligation of the parents, without it, therefore, being necessary to know the identity of the donor.

The third place was the autonomy of the parents and the right to privacy. In favour of suppressing anonymity:

  • secrecy has the potential to harm everyone involved (Ken Daniels)
  • if you wish to teach your children the values of honesty, openness, trust and love, then how can you not mirror these in your own relationship (Ken Daniels)

In favour of anonymity:

  • some parents may consider the secret to being necessary if their environment excludes their children for whatever reason
  • the power to decide whether to reveal the origin to the child seems to be consistent with the value, which is a stigma to the parental freedom

Even if children conceived by donors have the right to know this information, anonymous gamete donation is not inconsistent with disclosure.

Regarding the value of genetic inheritance, in favour of suppressing anonymity:

  • people who do not have information about their genetic family, lack something which is considered essential

In favour of anonymity:

  • emphasizing the importance of genetic information could promote genetic essentialism
  • social forms like family, motherhood, and fatherhood could be fundamentally determined by a biological determinist (J Burr and P Reynolds, 2008)

If genetic connections were not imbued with such importance, perhaps parents would be less reluctant to reveal that the gametes were donated.

And the last value was donor confidentiality. In favour of suppressing anonymity:

  • there is a curiosity among donors to know what their offspring is like
  • the right to know medical information

In favour of anonymity:

  • curiosity does not justify the knowledge of offspring. Access to the donor’s identity is not necessary (Ravelingien, 2014)
  • medical information is available to donors

Values such as privacy and confidentiality could be damaged both in the donor and their relatives when anonymity is exposed.

Conclusions

Following the bioethical deliberation and after having examined the main values that become part of the two extreme courses (anonymity of the donation against its suppression), the best intermediate course would be the one that tried to safeguard the greater number of values involved, namely donor-conceived individuals are morally entitled to access general (non-identifying) information about their origin. In this way, both donor-conceived people’s rights to private life, identity and family, and donors’ right to privacy may be recognized and balanced.

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Anonymous vs. Non-anonymous Egg Donation – A World of Opportunities Explained By César Díaz García

What is the best option: non-anonymous, anonymous egg donor? - Questions and Answers

How do you deal with an unknown medical history of the donor if it comes up in my child in the future if the donor is anonymous?

Even if the donor is anonymous, the recipient and the patient will know the donor’s medical history. In Spain, it is mandatory to know the donor’s medical history, and it’s available for the patients. Even if the donor is anonymous and the children don’t know the identity of the donor, the medical history can be revealed.

What age should you consider egg donation?

It depends on the diagnosis. The egg donation is not chosen because of the age. It’s a choice because the ovarian reserve is very low, f.e. We have patients who are 40 or 45 years old, and they need egg donation, but some patients are 30, and they have menopause, then they also will need egg donation. It all depends on the ovarian reserve.

Me and my partner are wondering which would be better: to tell the child about the donor or not. We both think that we should not, however, I hear most people would tell. What is the chance the child will find out later by any tests, for example, also can you see pictures of the donor if it is non-anonymous?

In Spain, you can’t see pictures of the donor, it’s not anonymous. In my personal opinion, I think it is important to tell the child what their origin is. Some scientific data suggests that it will be very easy to find out the origin in the nearest future. It’s possible to just send a sample, and we can find out more about our genealogical origin. I think it’s better to tell the child that he/she is donor-conceived, but it’s very personal, it depends on a lot of things in the family, therefore it depends on your case, your opinion.

When a couple or a single woman is coming to the clinic in Spain inquiring about egg donation, what sort of counselling do they have on whether to tell the child or not? How many sessions do they have? Is it mandatory?

It depends on the clinic, but in general, the psychologists agree that it is better to reveal the origin of the child. It again depends on the family, some characteristics but in general, I think almost everybody thinks the same that it’s best to tell the child of their origin. However, it’s not necessary to reveal the identity, it’s not mandatory.

Those stats from the presentation surprised me, especially now there is more of a trend towards openness, and research is suggesting that openness is best, as well as donor-conceived adults saying they would want to know.

It’s an ethical issue more than clinical or legal, and about the openness, I think it’s possible to explain the child’s origin but to know who it was and the identity of the donor is secondary. The donor is not the mother or father, the family is where the child is growing up.

As a donor-conceived adult from an anonymous sperm donor who was not told from birth about my origin, I would argue that I should have been told. I also feel that it is my right as a human being to have the identity of my genetic parents. Have you spoken to any donor-conceived adults about how they feel?

Unfortunately, no, because, as you know, in Spain, egg and sperm donation is anonymous. Children don’t have this right, and they don’t know what is the origin of the donor. This is one of the most difficult topics to discuss because we don’t know what the children or the adults will think about it in the future, but I agree with you. It also depends on a social plan, the family, and the person, but in some cases, I think it could make things worse when they would know not the origin but the donor. You’ve mentioned that it’s a right as a human being to have the identity of the genetic pattern, but what is the identity of the genetic pattern. Is it a genetic identity or knowing the donor personally, or knowing the donor as if he were the other parent? I think they are different things. I agree that a child should have the right to know the origin, but to know the donor personally, there are half/half benefits.

I would be interested to know what constitutes the general information that you mentioned in your conclusion?

General information is everything about the health, medical information the data, the phenotypical characteristic of the donor and almost everything except the identity.

As a mum through egg donation, I just want to share that telling was a very scary prospect at first, but now as my children are here, my fears have lessened, and I know it’s the right thing to be truthful about their origins. I also now wish to be able to give them more information about the donor if they ask, whereas before, I was more comfortable with anonymous. I feel that an open ID at 18 is a good option to provide some anonymity but to allow rights to the children too. Is this something that Spain might consider?

In Spain, it’s an anonymous donation, and we don’t consider for this to change. If the parents consider revealing the origin to the child, the psychologist’s advice is that the best way is to reveal it when the children are 3 to 5 years old, it’s better not to wait until 18. It’s good to normalize the situation since they are children and not wait until they are 18.

Most donors are young, haven’t had medical issues come up, or they haven’t started having any medical conditions such as cancer, etc., those things happen later in life and could affect the future child’s health. Is there any way to have a donor contract that says medical history should be updated over time, even if it is anonymous?

The law says that if children need to locate a donor in the future because of cancer or need a transplant, etc., it’s possible. The law allows us to locate the donor. As I explained, we have a DNA bank for these cases, it is necessary to have this genetic material from the donor, so in special cases, it’s possible to locate the donor and to know what’s the identity to help the children even if it’s anonymous.

What if the child will insist that they want to find their biological mother?

In Spain, we don’t have this problem because the law doesn’t allow us to locate the donor. I think it’s important for the parents to explain the situation. Some people think that egg donation is similar to adoption, but it’s not similar at all. This is completely different, the baby considers a mother the person that gave birth and is taking care of the child from the very beginning, this is the mother, not another person who gave the eggs. Knowing the donor is only for curiosity reasons, it’s not the same as in the case of adoption.

Do you think clinics should provide more support to patients to help them with talking and telling to encourage and support disclosure?

I completely agree with you. There is a necessity to find psychological support. I discuss this with patients, it’s important to not only explain how the treatment works but also discuss the future and all aspects of this. Sometimes, the doctors forget about it, so I completely agree with you.

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Authors
Dr Rocio Núñez Calonge

Dr Rocio Núñez Calonge

Dr Rocío Núñez Calonge is a Scientific Advisor at Vistahermosa UR Group (International Reproduction Unit). She is a specialist in human reproduction, working in this field since 1985 where she started at the Ramón y Cajal Hospital in Madrid. She did her post-doctoral training at the Center for Research on Reproduction and Women's Health (Department of Obstetrics and Gynaecology, University of Pennsylvania Medical Center) of Philadelphia, USA. She obtains a Senior Embryologist degree from the European Society of Fertility and Human Reproduction (ESHRE). She has belonged to the board of directors of various scientific societies (SEF, ASESA, ASEBIR) and is a member of the editorial committee of several scientific journals. She has been invited to give talks at numerous conferences. From 2005 to 2017, she was a Deputy Director of the Tambre Clinic, head of Quality, secretary of the Tambre Foundation and founder of the Ethics Committee. She has worked as international Consultant for Assisted Reproduction Centres (Merck). She also set up the learning platform: TIMBRE-LAB Master in Bioethics. She's a Professor of several master's degrees in reproduction: Universidad Complutense, Madrid; Universidad de Barcelona, ​​Universidad de Miguel Hernández, Alicante; Universidad Alicante; Universidad Badajoz; Universidad Almería. She's a Chief executive of Revista Iberoamericana de Fertilidad y Reproducción Humana and a Member of the IERA Foundation and the NeNe Foundation. Her research interest includes male fertility, low ovarian reserve, and ethics in reproduction. Biology PhD from the Complutense University of Madrid.
Event Moderator
Sheila Lamb

Sheila Lamb

Sheila Lamb, DEIVF, had a six-year unexplained infertility journey that involved fertility treatment and loss. A week after her forty-seventh birthday, she welcomed her rainbow daughter into the world, who was conceived using a donor egg. Sheila now supports others who are struggling to conceive through her Fertility Books series - and Infertility Doesn't Care About Ethnicity, a collection of real-life short stories covering the emotional realities of infertility, fertility treatments and loss.
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