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.
The law is very strict, and the donors undergo a general assessment, and there are several tests they need to go through.
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.
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.
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:
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:
On the other hand, in favour of anonymity:
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:
On the other hand, in favour of anonymity:
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:
In favour of anonymity:
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:
In favour of anonymity:
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:
In favour of anonymity:
Values such as privacy and confidentiality could be damaged both in the donor and their relatives when anonymity is exposed.
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.
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.
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.
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.
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.
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.
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.
General information is everything about the health, medical information the data, the phenotypical characteristic of the donor and almost everything except the identity.
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.
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.
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.
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.