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.
- young women (<35 years old)
- healthy women
- medical and family background
- psychological assessment
- ovarian reserve
- general analysis (serological and microbiological tests)
- 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.
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
- 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.
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.
IVF and Donor Eggs –Anonymous or Non-anonymous? Explained by Mireia Poveda Garcia
Anonymous vs. Non-anonymous Egg Donation – A World of Opportunities Explained By César Díaz García