Non anonymous egg, embryo and sperm donation in Portugal. Legal aspects, costs and availability.

Vladimiro Silva, PharmD
Embryologist, CEO, Founder & IVF Lab Director at Ferticentro, Ferticentro

From this video you will find out:

How anonymous donation in Portugal became non-anonymous overnight
What makes the Portuguese IVF legislation the best one in Europe
Why it is so important for a child to know their origins
Why keeping donor anonymity is highly risky
What are the current available options to find your genetic relatives

Non anonymous egg, embryo and sperm donation in Portugal. Legal aspects, costs and availability.

Non anonymous egg, embryo and sperm donation in Portugal - all you need to know

Portugal is not the first destination that comes to IVF patients’ mind when they are looking for treatment options abroad. And it is worth to take a closer look at what this beautiful country has to offer in terms of assisted reproduction techniques – especially if you are interested in non-anonymous donations. In this webinar, dr Vladimiro Silva, Embryologist, CEO, Founder & IVF Lab Director at Ferticentro (Coimbra, Portugal) is answering the most common questions about legal framework and availability of non-anonymous egg, sperm and embryo donation in Portugal. Portugal can surely boast one of the most progressive and patient-friendly IVF legislations in Europe today. According to dr. Vladimiro Silva, it became even more exceptional on April 24, 2018 when the paradigm of egg/sperm donation treatment was unexpectedly changed. While deciding on a surrogacy legislation issue, the Portuguese Constitutional Court “accidentally” banned donor anonymity (which it ruled in favour of only 9 years earlier). And as it was the highest court in the country, there was no appeal possible. As a result, all IVF clinics in Portugal simply lost of all their donors overnight. Anonymous donors were no longer authorised so a lot of egg/sperm donation treatments were put on hold very abruptly. Since no one saw it coming, the challenge was enormous – and it required a quick reaction.

Non-anonymous egg donors – the new reality

Dr Vladimiro Silva says that in the first two weeks after the change in IVF legislation, his team called more than 600 people, asking them whether they accept to donate their cells on non-anonymity conditions. As it was a difficult shift also from a psychological point of view, it required a lot of counselling and thorough explanation of the new reality to donors. Surprisingly, 97% of the clinic’s registered egg donors and 70% of their registered sperm donors accepted to be non-anonymous. However, examples from other countries with the non-anonymity legislation showed that the overall number of donors could drop very significantly. That’s why a lot of campaigns were launched immediately, including official public hospitals campaigns, campaigns from private IVF centres as well as the ones from the Portuguese Society for Reproductive Medicine and patients associations. And the effects were more than impressive. Donations peaked and Portuguese clinics ended up having more donors than ever before. According to dr. Silva, it was totally counter-intuitive – and even paradoxical. Currently, there’s no shortage of games in private IVF centres in Portugal. And his clinic, Ferticentro, even established the first private egg and sperm bank in the county.

IVF legislation in Portugal – How it works

Dr Silva admits that initially, he was against the new IVF legislation as he was afraid that the clinics would lose all their donors. However, when he saw it in practice and started talking to patients who were undergoing the process, he changed his mind. In his opinion, the current legislation is much more ethical and much more respectful of human rights. Nowadays, the Portuguese IVF legislation is one of the most progressive and patient-friendly in Europe. Children born from donations have the right of access to the identity of their donors at the age of 18. The access to donor’s ID is granted and guaranteed by the Portuguese state and the information about donors is kept for 75 years. The latter is especially important as it means that an 18-year old child does not have to decide to learn about their donor if they are not ready yet. The decision can be done later and the information will still be available.

Donation – per egg donor is limited

Dr Silva also stresses that the number of donations per donor is limited: egg donors can donate 4 times per lifetime and sperm donors can donate to up to eight families. The process is controlled and transparent – everything is registered in the database of the national ART authority. Besides, the process of donor compensation in Portugal is fixed by law: it is 878€ for egg donors and 44€ per sperm collection (the same for all public and private centres).

The importance of knowing one’s origins

In Dr Silva’s opinion, the process of non-anonymous donation – apart from being ethical and transparent – is also in compliance with human rights standards. It is indisputable that getting to know one’s origin is something that everybody wants – and can’t help learning. And nowadays it is more than easy due to the availability of innovative technology and genetic testing. There are a lot of online databases where you can send your DNA swab from and get information on your genetic profile. There are also associations that help you find your genetic relatives. For example, a French association PMAnonyme has already revealed 37 sperm donors and found 186 siblings. So the truth is that there’s not such thing as an anonymous donor anymore. Dr Silva thinks it’s pointless to continue with donor anonymity as databases of genetic information are growing bigger every day. It is not even needed for the donor to register himself or herself in these databases – a couple of their cousins could be enough for them to be found. Besides, there are still other ways of finding the truth, such as mitochondrial DNA studies or even DNA detective services. From such perspective, keeping donor anonymity is highly risky. Dr Vladimiro Silva says that with anonymous donation, we lose control over the process of finding donors which means that a donor may be suddenly contacted by his genetic kids when he or she least expects it. On the other hand, the number of donations is not controlled in any way what may result in one person originating hundreds of kids in many different countries.

A human rights perspective

Taking into account all that was said before, we also have to remember that knowing where you come from is simply a question of human rights. Dr Silva says that this fact has already been recognised by the European Parliament. It issued the declaration saying that international and European human rights law has moved towards recognition of the right to know one’s origins. The Committee on Social Affairs, Health and Sustainable Development believes that anonymity should be waived for all future gamete donations – however, the anonymity of gamete donors should not be lifted retrospectively. According to Dr Silva, getting to know the identity of the donor is something that we cannot help now, and certainly not in the future. So we can either do it in a controlled way (by introducing non-anonymous donation) or in an uncontrolled way (by keeping donor anonymity). The latter may lead to the situation when donors – who don’t want to be found – are discovered in one of the many possible ways currently available. Children born from donations, on the other hand, may experience a lot of disappointment when they realise the donor they searched for does not want – or simply cannot be – contacted.

The solution

Dr Vladimiro Silva says the Portuguese legislation is the best solution to all the problems he mentioned in his presentation. Firstly, it assures that no donors are surprised by unexpected genetical offspring knocking at their door. Secondly, every family controls how and when the information on donor conception is disclosed – so it cannot happen by accident. Thirdly, because of the transparency of the legislation (including transparency in donor compensation and number of donations), donating one’s gametes is perceived as a generous act to be proud of and Portuguese clinics have no problems with the availability of donors. It translates into the lack of waiting lists and affordable treatments.

Non anonymous egg, embryo and sperm donation in Portugal - all you need to know - Questions and Answers

I appreciate the fact that you went non-anonymous. When I started the egg and sperm donation process, I was very surprised that most countries prohibited it. I wonder why?

It’s often a cultural thing. I don’t know if I can talk for other countries but in Portugal, it has always been allowed since we’ve had this IVF legislation in the first place. Obviously, it is related to a more conservative view of the society. We all know that in some religions, donations are not well seen, especially in extremist groups. For example, in the catholic religion, some members of its extremist wing are against donation. The same in case of Muslims: some of them are in favour of donation and authorise it while others are against it. Judaism allows donation but only in certain circumstances. Religions and conservative values have always been essentially against donation – and it happens with all religions in many countries. It is often about the influence that those conservative views have on the law and government and there is also the historical background of the country. For example, the first countries who authorised open donations were Sweden and the UK which are known for having a very liberal and open view of the society and their habits. I believe that the tendency worldwide, like in other things, is for the more liberal views. This is one of the advantages of globalisation that we tend to think of others more and look at them. For some families, donation is the only way to have kids – and there is no alternative. Obviously, adoption is also an option but it’s always different from having a child of your own. So that’s my explanation, I think it has to do with the conservative views mostly.

Do you think non-anonymity in donations will extend towards other countries, like e.g. Greece?

Actually, I don’t know the political situation in other countries very well but I believe that in 10 years’ from now, everywhere in Europe the donation will be non-anonymous. It’s simply pointless to keep it anonymous. It may just bring a lot of suffering – both to the children who are born from anonymous donations and their parents. We can’t help the disclosure of the identity. Let’s say that someone decides not to share with their kids the fact that they are born from donation. If later on in life, their child – just out of curiosity – decides to get to know their origins and sends their DNA swab to one of data centres, he or she may find out that they have cousins in many different countries. And there’s no secret anymore. So having access to the truth in a controlled way is preferable to having the risk of finding it out by accident because that could bring the lack of trust towards the parents. In fact, it’s almost like a treason. So I think that Greece and every other country will move into non-anonymity. I don’t know when it happens, whether it takes ten or twenty years but it’s certainly an irreversible way.

I live in Spain at the moment although I am not Spanish. Here, sperm donation is confidential which does concern me as we can’t cross borders right now. Is there any way to visit a clinic or use a sperm donor in Portugal?

First of all, you can cross borders with the declaration that you are crossing it for health reasons. We have already received some Spanish patients after we reopened the clinics and we resumed our normal activity. Since this change in legislation, we have received a lot of patients from Spain. They are travelling by car because there are no flights at the moment. At the border, they show the declaration from our clinic that they have a treatment schedule with us and they are allowed to pass. So you just have to send us an email and we will walk you through the process. It’s actually very easy. You can start your treatment in Spain and leave the last part to be done here in Portugal. However, in Spain, according to the current legislation, you cannot use non-anonymous donors.

You were referring to the European Human Rights law that allowed the non-anonymity of sperm and egg donation. Can you please tell us which specific law do you refer to? Do you think this could be lobbied in other EU countries? If the law is adopted in other countries later, do you think the identity could be revealed retroactively?

First of all, actually there is a ruling from the European Court of Human Rights against the anonymity of donors. I don’t have any reference right here with me but if you google it, it’s very easy to find. The declaration that I’ve shown in my presentation is from the European Parliament and it’s also online. And of course, you can just email me and I will be very happy to send you the article and maybe also the information from the European Court of Human Rights. Do I think this could be lobbied in other countries? Certainly, because it’s already being done by the European Parliament. There is a lot of pressure over all countries to adopt this kind of legislation. And the more pressure, the better. I think everyone should move into this kind of legislation. But, on the other hand, I don’t think that the identity of the donors could be revealed retroactively. By doing so, we would be violating the donors’ rights. Here in Portugal, such a possibility was discussed and luckily the Parliament ruled against it. They said that donors who have donated before the Constitutional Court’s decision would still remain anonymous and only new donors will be non-anonymous. We also have to balance the rights of those people who very generously donated their cells to help other people in forming their families. They were not supposed to reveal their identity so it wouldn’t be ethical to change the rules at the end of the game. I believe the European Parliament’s declaration says the same. It shouldn’t be retroactive, it should be only from that moment on. But again, as I said, I don’t think there would be any difficulty to find the identity of those anonymous donors. We don’t even have to wait ten or twenty years because it is already possible right now.

Do you also offer embryo that are left by other couples? I have heard that Spain and the US do it a lot and it is called ‘embryo adoption’ because there are many embryos frozen that are not used anymore. These embryos may come from couples who did IVF and just produced more embryos than they needed. Will the information about these couples also be revealed?

The answer to the first question is: yes, we do have embryo adoption in Portugal. We have a lot of embryos available for adoption. Unfortunately, there is some bureaucracy associated with the adoption process but we do have embryos available for adoptions. Regarding the last part of the question about the identity of embryo parents: it will depend. Here in Portugal, an embryo can only be donated after it stays frozen for at least three years. So as today we are in May 2020, it means that the most recent embryos available for donation were donated in May 2017. And this was before the non-anonymity law and it means that these embryos were donated in the conditions of anonymity. If the parents of those embryos agreed to be non-anonymous, they donated in non-anonymous conditions. If they didn’t agree to be non-anonymous, the only way that these embryos can be used is in an anonymous way. Once we get to 2021, we will have the first non-anonymously donated embryos available. It means that the access to the identity of the progenitors of those embryos will be granted by law.

Do you have Christian donors?

Yes, of course. Here in Portugal, like 90% of the population (or even more) is Christian and Catholic so almost all of our donors are Christians. Of course, it’s not a factor while selecting donors. We don’t ask people about their religion but it’s just common statistics. We live in the country where more than 90% of the population is Christian so it would be impossible not to have Christian donors.

Is the cost of non-anonymous donors different than that of anonymous donors? For example, if you purchase sperm from a Danish sperm bank, the prices are different.

In Portugal, all donors are not anonymous. We are authorised to use anonymous donors from before the change of legislation so we have a few of them. But we don’t make any distinction. Well, at least at our clinic, the cost of using an anonymous sperm donor is the same as the cost of using a non-anonymous one. It’s always 450 Euros. So there’s no difference and we don’t make any distinction between the two types of donors.

Does your clinic help single women and if yes, to what age?

Yes, of course. We help single women as well as female couples – we do shared motherhood and the ROPA method. Here in Portugal, we can treat women with a male partner, single women and also lesbian couples. We are allowed to treat women until the age of 50 but excluding 50 – which means 49 years and 364 days. So again, it is a very liberal legislation and very inclusive.

What is the ethnicity of your donors?

We have all kinds of donors, we don’t discriminate anyone. Obviously, we have more the so-called Mediterranean-style donors but we also have black, Asian and blonde donors. So as I said, in case of egg donors, we have more than 2,000 registered donors. So it’s quite a lot of people.

Do women get to see donors’ photos to choose?

We don’t share photos of the donors. We can work with donors from the Danish sperm banks as long as they are not anonymous but here in Portugal – at least at Ferticentro – we’re not sharing photos of the donors. We just give information on their phenotype and blood type and we can also disclose some non-identifying information. It is important for us that people, who are receiving the donation, could somehow relate to their donor. Obviously, sometimes we get all kinds of questions about the donors, for example, if they are left-handed or if they like rock music, etc. We know that these are not genetic issues but people need to feel some connection to their donor so they can feel right about the donation itself. As long as such information doesn’t disclose the donors’ identity, we can share it. Of course, it happens that we don’t know answers to all the questions but we can always talk to patients about donors and give them some information about them. But we have to keep their identity confidential because it can only be revealed to the person born from the donation when he or she reaches the age of 18 years old.

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Authors

Vladimiro Silva, PharmD

Vladimiro Silva, PharmD, embryologist, CEO, founder and IVF Lab 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 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.

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