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Transparent egg donation: the new quest

Vladimiro Silva, PharmD
Scientific and Executive Director, Ferticentro

Category:
Donor Eggs, Embryo donation

transparent-egg-donation-Ferticentro-r
From this video you will find out:
  • Why is accessing donor ID crucial in transparent egg donation, and what information can it provide?
  • How does genetic testing impact the traditional model of anonymous egg donation?
  • What criteria are utilized in selecting egg donors for the donation process?
  • What does it mean to have a non-anonymous donor?

Transparent egg donation: the new quest

During this event, Vladimiro Silva, Scientific and Executive Director of Ferticentro explored the topic of transparent egg donation, including its processes, procedural details, and donor selection criteria. She offered valuable insights into the latest advancements in fertility treatments.

When we are talking about egg donation, we need to be aware that it’s never a first choice, besides a single woman or a lesbian couple, who would need to consider a donor. That involves a lot of questions that have a direct implication on the patient’s family and the life of the future child. This is why it is so important to assess the donor ID.

Egg donation – human rights implications

Why do we need to have access to the donor ID? The first point is that it is a human rights issue. The European Court of Human Rights has already made some decisions recognizing the right of every person to have access to their origins. As per the document presented by The Committee of Social Affairs, Health, and Sustainable Development, it was stated that anonymity should be waived for all future gamete donations. These are recommendations for the members of the European Union and other countries, but it is a clear sign that there is a movement on the human rights side towards giving access to the identity of the donors.

Egg donation – public health concerns

Another aspect discussed was that it’s also a public health issue. Why is that? It’s because people conceived by anonymous egg and sperm donations only know half of their medical history, or even none if it is a double donation. Therefore, the identity of the donor can be of particular importance if, for example, there is a suspicion of a genetic disease. If someone in the family is affected, it is really important in terms of the detection, prevention, treatment, and management of genetic diseases. We need to bear in mind that the only safe way to have access to the genetic history of the donor’s family is by having direct access to the egg donor herself, or at least to be able to contact her in a relatively easier way. If the donor is non-anonymous, the donor knows that she can be contacted, and she’s someone who is expecting to be contacted. In several countries, there is no effective central control over donation limits, and then there is the risk of consanguinity. In Portugal, there is a clear limit in the law where it is stated that an egg donor can only donate 4 times in her lifetime, and these donations are effectively controlled by the state. The donation code is directly linked to the donor’s national ID or passport number. If the donor is not Portuguese and for that specific national ID number or passport number, there could be only 4 donation codes. Therefore, if the donor donates elsewhere, she can’t donate in Portugal for the 5th time. However, in many countries, these types of limits do not exist.

Egg donation – ethical considerations

It’s also an ethical issue because when deciding whether the donor is anonymous or non-anonymous. The decision of accessing the identity of the donor should belong to the children conceived through the donation who are old enough to have their own opinion, not to their parents, not to the politicians, not to the state. It’s about respecting someone else’s life and opinions.

Finally, it should be emphasized that it is inevitable. Nowadays, DNA banks are available all over the world; there are banks with more than 30 million persons in their database. So it is extremely easy to find out the identity of a donor. In one of the articles shown in the presentation, published 8 years ago, researchers were already saying that the end of donor anonymity is approaching because genetic testing was driving anonymous gamete donation out of business. Why is this happening? One of the reasons is that it’s possible to send DNA to services like AncestryDNA, receive a kit, swab, send it back, and wait 2–3 weeks for results, for example, that you are 20% European, 10% African, etc. Then, they offer contact with relatives for a fee, granting access to potential half-siblings and cousins. Therefore, even if the donor himself or herself has not sent her DNA to these databases, sometimes it’s extremely easy to find just one or two of his/her cousins, it’s possible to triangulate the information and find out about his/her identity.

Non-anonymous egg donation

What does it mean to have a non-anonymous donor? Why is it so important?

  • you always decide what is best for you and your family

The decision whether to tell the child that they were conceived through a donor or not is a decision that ultimately belongs to the families. It’s preferable for a child, they know forever that they were born from a donation. It’s part of their identity, all recent studies show that. However, it is a private decision for every family. Each parent should decide whether to disclose to their children whether they were conceived through a donor or not. State, clinics, and doctors shouldn’t interfere in the private decisions of the family.

  • if you choose to disclose the information to your child, he/she will have the legal right at the age of 18 to request information about the identity of their donor.

This is a right of the children, not a right of the parents, and not an obligation from the state. It is up to the child to decide if they want to have access to the identity of these persons or not, and they have the right to change their minds. If they don’t want to have access to this information today, they have every right to say, “I’ve changed my mind,” at the age of 20, 30, 50, or 60, because this information should be kept for a very long time (75 years in Portugal).

  • your child’s privacy is privileged and protected

It’s a one-way system, the donor can never reach-out to your child. Donors don’t have any legal claims towards children born from their donation and have no rights over them. Equivalently, your child will have no legal claims or rights in relation to the donor.

  • nothing is left to luck

Future parents have access to extensive donor profiles that cover a long list of characteristics so they can make an informed choice. Phenotype matching is done manually, in an accountable way, to increase the chances of resemblance between future parents and your child.

Intended parents sometimes look for physical characteristics, sometimes they look for psychological characteristics, level of studies, and education, everyone has their own idea. All positions are respectable. Within the framework of the law, they are given as much information as possible and as the donor has agreed to share.

  • clarity and accountability for all parties

Clinics ensure that every donation is ethically sourced and that each donor is treated with dignity.

Clinics and the state have certainty over the exact number of donations per donor. In Portugal, egg donors can donate 4 times in their lifetime, separated by at least 3 months. Sperm donors can donate to up to 8 families. The number of donations per donor is effectively controlled through a donation code assigned by the national IVF authority and is linked to the donor ID.  Auctions for donors are strictly prohibited, maintaining the integrity of the donation process. All donors must sign a receipt, no cash payments are allowed.

Non-anonymous donation vs. anonymous donation – comparison

There are quite a lot of differences when we compare anonymous donation system with the non-anonymous one. In anonymous donations, parents still control the narrative; it’s their choice whether to disclose the donor status to their children. However, with non-anonymous donations, families have the option to contact the donor in case of life-threatening diseases or disorders, a feature not available in anonymous systems. In Portugal, this contact is facilitated through the IVF Authority. Non-anonymous donors are typically more prepared and willing to be contacted if necessary, unlike anonymous donors who may not have been prepared for such contact.

Certainty about the number of siblings born from a single donor is not a characteristic exclusive to anonymous donations. However, in countries with anonymous donation systems, this certainty often doesn’t exist due to inefficiencies in central control. The lack of efficient monitoring makes it difficult for the state to track the number of donations per donor. This issue can be addressed through the use of donation codes, although it remains a challenge in anonymous donation systems.

Full donor profiles are typically available only in non-anonymous donation systems. The process of selecting donors involves rigorous clinical and psychological evaluations. Clinical evaluations include thorough gynecological examinations, assessment of general health, screening for infectious diseases, and genetic screening for over 2,200 diseases. Psychological evaluations assess the donor’s mental health, openness to the donation process, and commitment to the responsibilities involved.

Donor selection

Genetic screening plays a crucial role in donor selection. Donors are tested for more than 70 diseases initially, with the option to upgrade to screening for over 500 or even 2,200 diseases. This thorough genetic screening helps ensure the safety of the donation process and reduces the risk of complications, especially when introducing someone else’s genes into a family.

Egg donors typically fall within the age range of 18 to 34, with no limits on nationality or ethnicity. While the majority of donors are Portuguese, donors from other countries, such as Brazil and other European countries, are also accepted. Donors must be in good health, fertile, and motivated to undergo the donation process. Education and support are provided to donors throughout the process, encouraging altruism and raising awareness about donation.

Overall, the modern non-anonymous donation system offers several advantages, including the ability to contact donors in case of medical emergencies, comprehensive donor profiles, and rigorous screening processes for both physical and psychological suitability.

What kind of information do patients have access to about the donors?

  • physical characteristics (hair, eye color, height, weight, blood type, skin tone)
  • donor’s perspective on non-anonymity (for example, openness to potential contact from offspring in the future, stating it would be welcomed)
  • donor’s clinical profile, including genetic testing for carrier status
  • motivation for donation
  • genealogical table
  • emotional intelligence scores
  • psychologist opinions
  • personality profiles (to offer a comprehensive view of the donor)
  • personal details, such as hobbies, favorite foods, and memorable experiences

Egg donation – treatment

Patients undergo medical consultation, followed by a donor selection questionnaire. A donor coordinator then matches patients with suitable donors based on their preferences and requirements. If a patient isn’t satisfied with the initial selection, the process is repeated until they find a suitable match.

Treatment can be conducted in synchronized or standard cycles. Synchronized treatment involves a single trip to Portugal, lasting 8 days and 7 nights, where patients complete the final stage of treatment. However, nowadays, in about 90% of cases, a deferred treatment approach is performed. Patients typically make 2 trips to Portugal. During the first trip, which lasts for 2 days and 1 night, or even just a day trip, the initial steps involve sperm collection and gynecological evaluation, if not previously conducted in the patient’s home country. Between the 2 trips, we perform donor selection, stimulation, egg retrieval, fertilization, embryo culture, and freeze the embryos obtained. The second trip, typically a 3-day stay, involves the actual cycle start for the patient and the embryo transfer. There is a close coordination with the patient’s doctor in their home country to ensure smooth collaboration.

The advantage of this approach lies in optimizing endometrial preparation and donor stimulation without delays. Additionally, it provides clarity regarding the number of embryos available for transfer, which offers peace of mind to both patients and clinicians. However, the process requires 2 trips and may take longer due to the separate donor and patient cycles.

New technologies

Nowadays more and more new technologies are used in the egg donation process at the clinic as well as at the lab. At Ferticentro clinic, all available technologies without additional charges to patients are used.

  • RI Witness

Each patient receives a unique ID code and card, and the RI-Witness system is used for traceability, ensuring the security of patient samples throughout the process. This non-human system complements human oversight, providing additional layers of security and peace of mind for patients.

  •  Embryoscope

Time-lapse technology, such as the Embryoscope is also used to monitor embryo development. Patients receive videos of their embryos, enhancing transparency and understanding of the process.

  • Artificial intelligence

Artificial intelligence algorithms further help in embryo selection, although this technology is still experimental.

Conclusions

Transparency is crucial, especially when discussing success rates. The graph showing success rates across different age groups highlights the reality of fertility treatments. It’s important to avoid the manipulation of statistics and ensure patients understand the limitations and possibilities of each treatment option. For instance, preimplantation genetic testing for aneuploidy (PGT-A) may not significantly alter outcomes in egg donation cases, leading to ethical considerations regarding its necessity.

Ultimately, transparency should guide decision-making in fertility treatments, whether in countries with open or anonymous donor systems. Patients deserve clear, honest information to make informed choices about their reproductive health.

- Questions and Answers

Have you had any cases in which the egg donation did not work at all after trying many times, and how often does that happen?

Approximately 40% of cases do not succeed after multiple attempts, despite efforts. It’s normal and can be due to various factors such as thin endometrium, male factors, immunological issues, etc. There could be a lot of reasons why the egg donation treatment doesn’t work. Actually, the last part of my presentation where I was showing the results from the American registry shows exactly that it’s a 60% probability. So unfortunately, in 40% of the cases, it doesn’t work.  

When exactly did you start with these new donor profiles?

We have started using detailed profiles in 2020. Obviously, the initial ones looked uglier, but their content was more or less what’s inside the new ones. The new features include emotional intelligence and personality tests, introduced in 2024.

What is the situation in case of embryo donation? We will have an IVF treatment with embryo donation, but we were told by our clinic that they have much fewer embryo donors than egg donors. In this way, we do not really have any chance to choose the embryo even to look a little bit similar to us.

Unfortunately, that’s the case because of embryo donation, at least in Portugal, when embryos that are donated are created by other people when you’re doing your own treatment. Another example is if you divorce in the middle or for whatever reason, you can decide to donate your embryos to other patients. These embryos already exist. What we can do is just tell the story of that embryo. We can say that this embryo is from a patient who was 34, her husband was 35, they were Caucasian, etc. Typically, we have less information on donated embryos because when we’re talking with donors, these donors are screened, and we can test the donors for 2,200 diseases. We ask them all sorts of questions. The psychologist consultation is designed for donors to be completely aware of the fact that they will be found and the impact of all that. In Portugal, we need to wait 3 years before the embryo can be donated. The couples have time to think about that. These are not rushed decisions.

Can you talk a bit about the quality scores AB and A, C, and D, and how much do they differ in case of a live birth?

This classification is being abandoned nowadays. Making it more clear, for example, there is a very interesting study made in Italy with research where they tested embryos that were classified as AB, C, and D, and then they tested them genetically, and they reached the conclusion that there were no significant differences between the risk of an embryo being viable or not. These are morphological classifications. It’s the embryologists who decide whether these embryos are viable or not based on what we see in static images. Nowadays, we have the Embryoscope, we have the dynamic morphokinetic classification, and we have artificial intelligence that is helping us more and more in assessing our embryos. Normally, we look at the old classification because this is something that we can grab. At the end of the day, we need to look at everything else. The morphokinetics of the embryo. I believe that maybe in years, there will be automated systems that will tell us whether an embryo is viable or not, based on things that the human eye can’t even see. To answer your question, if an embryo is a blastocyst, and if this blastocyst has developed within the real-time frames and so on, I would say that there is no difference. According to the studies that are published, there shouldn’t be any difference. Normally, when we grade the embryos as A, B, C, or D, we have to take into consideration criteria from different clinics. When we’re talking about the morphokinetics of the embryos, we are discussing how an embryo is at that particular moment where it was observed. An embryo can evolve, and it can expand, and there are a lot of different factors in embryo development that can trick the embryologist. This is why the classification of embryos in morphokinetics is useful. Obviously, A is better than B, and better than C is better than D. This is obvious, but those are not the only factors because, in terms of the probability of the embryos being genetically viable, there are no differences. A, C and D, it’s more about the stage of development of each embryo in every given moment.
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Authors
Vladimiro Silva, PharmD

Vladimiro Silva, PharmD

Vladimiro Silva, PharmD, embryologist, Scientific and Executive Director at Ferticentro and Procriar, two of the leading IVF centres in Portugal. Doctor of Pharmacy, Faculty of Pharmacy, University of Coimbra. MSc in Health Economics, Faculty of Economy, University of Coimbra. Post-graduated in Health Services Management, Faculty of Economy, University of Porto. Post-graduated in Clinical Analysis, Faculty of Pharmacy, University of Porto. Author of hundreds of lectures, oral communications, posters and scientific articles in Portugal and abroad. Vladimiro Silva speaks: English, French, Spanish, Italian and Portuguese.
Event Moderator
Caroline Kulczycka

Caroline Kulczycka

Caroline Kulczycka is managing MyIVFAnswers.com and has been hosting IVFWEBINARS dedicated to patients struggling with infertility since 2020. She's highly motivated and believes that educating patients so that they can make informed decisions is essential in their IVF journey. In the past, she has been working as an International Patient Coordinator, where she was helping and directing patients on their right path. She also worked in the tourism industry, and dealt with international customers on a daily basis, including working abroad. In her free time, you’ll find her travelling, biking, learning new things, or spending time outdoors.