Spanish fandango

A lot of DC Network members have children conceived at clinics in Spain…a country that must derive a huge amount of it’s foreign income from cycles of fertility treatment.  The laws are liberal in this country.  Much more so than in many other European countries.  Single women and lesbians, as well as heterosexual couples, can receive treatment which may be sperm, egg or embryo donation.  Some clinics have reported great success – similar to fresh cycles –  with eggs that have been vitrified.   Couples and individuals who have attended Spanish clinics are glowing in their praise of the organisation, cleanliness, dazzling high-tech efficiency and above all friendly customer service they find.  Staff mostly speak English – the most popular clinics have native English speaking co-ordinators in their ‘foreign’ department and best of all, donors are plentiful.  All this means that Spain draws to it from the UK, Germany, France, Italy and beyond many, many women seeking fertility treatment, above all egg donation.

The big problem with Spain, certainly as far as DCN members are concerned, has always been that not only are donors anonymous but they are chosen by clinic staff, rather than recipients themselves, and that very little information is available.  This varies from centre to centre but in many it is just the age of the donor and her blood group. Many will not even given the donor’s nationality or ethnic background.  The clinic promises that they will match physical characteristics between donor and recipient but the number of very beautiful, obviously Spanish looking, children at DCN meetings with typically English looking parents belies this.  It’s not a problem when children are small and parents are being open with their child, but differences in looks may well mean that children have a lot more questions as they get older.  And there is no chance at all as far as I can see of parents or children being able to get information in the future.  Although it is interesting that in the paper that has just come my way, the writer predicts that it will be the children themselves who will eventually demand a change.

Something that has been hard to establish is exactly what Spanish law says about how much information can be given to recipients about donors.  Many clinics hide behind a presumption that local law actually prevents them from being able to give more information.  This allows them to retain significant control, something we know from UK experience that clinics do not give up easily.  But this presumption was challenged when a clinic opened in Barcelona that gave a large amount of information…their lead doctor having trained at the Hammersmith Hospital in London and been influenced by Jennie Hunt, the senior counsellor there who is a fierce advocate of information and contact.  An enquiry by me, and some UK counsellors, to a Spanish psychologist colleague has brought forth a paper that sets out just what the Spanish system can and cannot do.

Firstly, it is clear that it is within Spanish law to give all information about the physical features of a donor to a recipient.  The paper says nothing about ethnic background, reasons for donating, occupation, educational level or values and I have made further enquiries about these aspects.

Secondly, the Spanish seem to have a rather ambiguous relationship to money.  Their Law 14/2006 of May 20th says, “The donation will always be non-profit or commercial.  The financial compensation can be set to only compensate strictly physical discomfort and travel and labour expenses that may arise from the donation and must not entail an economic incentive for this”.  Now this obviously started off in Spanish and may have lost something in translation but the emphasis on ‘no economic incentive’ seems clear.  However, the paper goes on to say that in research carried out in Spain amongst donors, the primary motivation for donating was financial.  So much for the HFEA copying the Spanish model in setting a fee for egg donation that did not amount to an incentive.

But the greatest criticism of the Spanish system is that there is no National Donor Registry and as a result there is no central control over how their information and information relating to recipients is held.  There is also no control over the number of donations a donor may make – the nominal number is six but no-one oversees this.  In addition Spain is in breach of many EU directives relating to the donation, procurement and control of tissues and cells of human origin and technical requirements of traceability and notification and side-effects and certain technical requirements related to the processing, preservation, storage and distribution of human tissues and cells.

 Provision was made in the first Spanish ART Act (1988) and in the current Act (2006) for a National Donor Registry but this has never happened.  Could it be that the commercial interests of all the clinics has proved an irresistible incentive for the government to turn a blind eye to legislation that might be seen to curb the practices of doctors who earn so much foreign currency for the Spanish economy?

My correspondent calls for the immediate establishment of the donor registry which could then link with other registries across Europe in order to establish traceability of gametes and donors.  Without a registry there is very little chance that children, either retrospectively or in the future, will be able to have information that may help them make sense of their background and secure their identity.  Without the demand from those who use – or in the past have used – Spain’s fertility services, what incentive will Spanish clinic owners have to ease their control and enact their law?  If this matters to YOU, please speak up.

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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29 Responses to Spanish fandango

  1. marilynn says:

    Thank goodness for the sibling registry and for DNA sites like 23 and me that Lindsay and Steph and the others promote. Lots of men are on their looking for their children and I am willing to bet in 15 years or less sites like that will be flooded with mothers trying to find their babies. Most of them will grow out of that idea that they were just “helping” other people become parents. From reuniting gamete providers and their kids they seem to wake up and get consumed with the idea that they don’t know who they’ve entrusted the life of their child to and they at least want to make sure they are ok and let them know the door is open. Reuniting families is very rewarding. Its terrible that Spain is making it so difficult for these families to stay in contact. Anonymity serves the interest of the clinics not the parents and not the customers and not the children. They can just take eggs from patients doing IVF without their permission and sell them as donated eggs nobody will know and who can stop them?

  2. oliviasview says:

    I have no evidence, or even inference, whatsoever Marilynn that clinics in Spain are taking eggs from IVF patients and using them as ‘donated’ eggs. There have been strong inferences that this happens sometimes in some Eastern European countries, but again, I have not seen actual evidence of this.

    • marilynn says:

      It sure happens here in the United States and if clinics did have to identify the source of every egg sold in some kind of registry reported to the government and that every child born would be positively confirmed to genetically match as the child of the woman who’s egg was reported as donated there would be much less “mix ups” here in the states where people loose their children forever never planning to donate anything! UC Irvine is a great example so is OHSU. I am just saying I agree that a registry has to be set up otherwise what is the incentive for a clinic to pay for women’s eggs when they can get them for free from their patients and sell them for 100% profit? They can market the same egg as brunette to one couple or blond to another, tallented at music or science or whatever they want. They won’t be able to give the child back to the clinic if its short not tall or brainy not athletic. Anonymity is really what the clinic likes I bet not so much the mothers or the clients or the children. Who would not want to know everything possible that related to the health of the child they created or commissioned – there is a certain amount of responsibility that comes with both right? I’m surprised people are willing to do it if they know that the resulting child will be placed at a disadvantage, not knowing all those relatives and their health issues.

      • Daleth says:

        Wow, you sound really scared, and like you’re making up reasons to be scared. Here are a couple of obvious incentives for clinics NOT to use patients’ own eggs as “donor eggs” for other patients:

        (1) It would negatively impact the clinic’s success rates (and thus lower its income, by lowering its popularity among patients) for two reasons:
        (i) the patient who produced the eggs would have a lower chance of success because she wouldn’t have as many eggs to “try” with, and
        (ii) the patient who received the eggs would have a lower chance of success because the eggs of women who need IVF treatment are, on average, of much lower quality than the eggs of young donors–that’s typically why the women need IVF treatment, after all, and IVF patients on average are a lot older than donors.

        (2) It would almost certainly be several different felonies–fraud, theft and assault (it is assault for a doctor to perform a procedure the patient has not consented to). A doctor or nurse convicted of even one felony will lose their medical license in most if not all states, and of course the resulting horrible publicity would devastate their IVF program.

        And no, actually, some degree of anonymity usually is something that parents and donors want–not an information blackout (parents usually want to know a lot about the donors), but they usually want some assurance that they won’t be forced into a relationship or given identifying information that enables them to stalk each other.

  3. Petra Thorn says:

    Hi Olivia,

    as a German infertility counsellor, unfortunately, I have had situations where German couples have left-over embryos in Spain and they felt forced to decide to donate these either to other couples or to reseearch although their preference may have been to destroy them.

    Some time ago, the following articles regarding the (ab) use of embryos appeared in BioNews:

    Spanish clinic allows IVF embryo donation ‘without consent’

    26 July 2010

    By Antony Blackburn-Starza

    Appeared in BioNews 568

    A fertility clinic in Spain is offering patients the option of using embryos ‘left-over’ from previous treatments without the donors’ explicit consent, the Telegraph reports. The Instituto Marques clinic near Barcelona, which provides fertility treatment to foreign couples, runs an ’embryo adoption scheme’ whereby patients can adopt an embryo which has been left behind by couples who have not decided whether to donate it to other patients, to research, or to destroy it.

    It is reported that the scheme, illegal under UK law that states patients must give specific consent as to how their embryos are used, is believed to be the first of its kind. The Telegraph reports the activity highlights the risk faced by fertility patients who travel abroad for treatment and are not fully informed about differences in the law.

    The Telegraph estimates that, out of the 317 British couples treated at the Instituto Marques since 2004, 114 did not decide what was to be done with their spare embryos. These may have been adopted and used to successfully produce children without the donors’ knowledge. These children would be genetic siblings of the original child and biologically related to the original couple, although they would not be considered its legal parents.

    Explaining why the scheme was implemented, one of its authors, Dr Marisa López-Teijón, said couples who have already undergone fertility treatment sometimes find it ‘easier’ to ‘ignore’ their unneeded embryos. ‘In this way, and despite the fact that the Spanish legislation on assisted reproduction offers all possible options in order to make a decision, we still find ourselves with hundreds of embryos that accumulate at our centre’, she said.

    Some commentators have expressed concern, however, that couples are unaware of the possibility that their embryos may be donated to further patients. Susan Seenan from Infertility Network UK said patients must familiarise themselves with differences in the law when choosing to travel abroad for fertility treatment.

    She advises that: ‘In this particular case perhaps patients may need to ensure that the clinic in question has in writing their express wishes as to what should happen to any spare embryos after they finish treatment’.

    A spokesman for the Instituto Marques clinic said that, in total, 460 babies have been born worldwide through the embryo adoption scheme.

  4. oliviasview says:

    Thanks very much for your contribution Petra. We too have heard of Spanish clinics using embryos for donation without the permission of their creators. It is very worrying.

  5. Gillian Handyside says:

    Hello.
    Thank you very much for that invaluable information about Spanish law (the details clinics can release about donors). Please could you tell me where I can find the paper you refer to and the precise clause(s) in Spanish law that allow for the release of information about donors?
    If it’s useful to other DCN members, I am happy to provide a translation into English of the clause(s) in question.
    Best wishes
    Gillian

  6. oliviasview says:

    Hi Gillian
    Apologies for the delay in replying. I have been on holiday for a week. The paper I had from the Spanish psychologist is in English that has been poorly translated. Have a look at the following link which gives exactly the same information in better English –
    http://www.eshre.eu/ESHRE/English/Guidelines-Legal/Legal-documentation/Spain/Donor-anonymity/page.aspx/188
    The Assisted Conception Unit at the Hospital Quiron in Barcelona is very open on it’s web site about the amount of donor information it gives. It is almost exactly the same as that available in the UK. If it was against the law to give this information I am sure the hospital would not carry this information so prominently.
    Hope this is helpful.
    Olivia

  7. gillian handyside says:

    Thank you very much
    :o)

  8. Rachel Elangey says:

    Hello Olivia
    Thank you for this valuable information. I can confirm the lax attitude from a certain clinic in Barcelona regarding controlling the number of children that are issue from the same donor. I had a baby thanks to a donor at this clinic last June (2011) and the clinic has never asked me if I gave birth or not! There is no follow up from their side at all (except directly after the pregnancy test).

    I looked at the Hospital Quiron website but was unable to find the area which is very open about the amount of donor information it gives. Could you give me directions please?

    Lastly, after now having read closely Article 5 of the Spanish Law pertaining to Donor Anonymity I will be re-contacting my clinic to ‘extract’ as much information as possible about my donor, beyond her age and blood type!

  9. oliviasview says:

    Hi Rachel
    Thanks for your comment and good luck with re-contacting your clinic re information. I’m afraid I don’t know anyone who has had any success with doing this but the more Spanish clinics know that they cannot hide any longer, the better. Here is the link to Quiron Hospital Information about Donors http://www.quiron.es/barcelona/reproduccion/index.php/en/what-can-you-know-about-donors

  10. Gillia Handyside says:

    Hello Olivia and Rachel,
    Last week I also contacted my clinic (Vista Hermosa in Alicante) asking for more details about my donors. I sent them the list of characteristics that the Quiron provides to patients (many thanks, Olivia) and the extract from the Spanish law that says donor-conceived children “have a right to obtain general information on their donors, excluding their identity”.
    The clinic simply replied,” We only provide [donors’] general physical characteristics.”
    I asked them why they couldn’t provide information which the children have a legal right to obtain but there’s been absolutely no reply since.
    Anyone got any ideas about taking this further?
    Thank you

    • oliviasview says:

      Hi Gillian
      I’m making some enquiries via colleagues in Fertility Europe who may be able to help with making an official complaint or bringing this issue to wider notice in Spain. I’ll get back to you.
      Olivia

  11. Gillian Handyside says:

    Hello
    Thank you for that, Olivia.
    In the meantime I’ve managed to make a small breakthrough with the clinic. They’re probably so fed up of me being polite but persistent that they’ve started responding to my email queries just to keep me quiet!
    I don’t think they willfully retain information but they’re visibly unused to giving it out. However, since I pointed out twice that Spanish law says children have a RIGHT to general information on their donors, they have now provided me with some details.
    I hope these can be used as a precedent by other people seeking information from Spanish clinics.
    Information received:
    – Ethnic origin of donors (in the form of the rather vague term “Caucasian”).
    – For female donor: Age, blood group, height, build, hair and eye colour. They also mentioned that the donor had a child, had a healthly BMI and a normal set of chromosomes, “smoked but didn’t drink or take drugs” and had no family history of major diseases.
    I’ve requested similar types of details on the sperm donor.
    It’s not a lot but it’s definitely better than not having anything at all to tell my child.
    Best wishes
    Gillian

    • Rachel Elangey says:

      Gillian Im happy youve been able to make a breakthrough and get some valuable information about your donor.
      I sent an email to Clinica Eugin asking for the same information on the Quiron website along with the Article 5 of the Spanish Law on donor anonymity and the part about having the right to have general information about the donor underlined and in BOLD.
      Ive only received an email to say that they’ve received my enquiry and will reply shortly. That was a week ago…..
      I may try to send a ‘certified letter’ which may carry a bit more weight.
      Olivia I would be very interested if you get some ideas on how to make an ‘official complaint’ or the name of a (bilingual) contact in a legal aid centre in Spain.
      Peristance pays off, Im sure!!
      Best
      R

  12. oliviasview says:

    Oh well done Gillian. That is a victory for you and your child and a great precedent set for others.

  13. Rachel Elangey says:

    Hello again,
    Ive just received a reply from the Clinica Eugin in Barcelona concerning my demand for more information about the donor. It came in a pdf attachment in an email, signed by the medical director of the clinic.
    Here’s what they sent:
    GENERAL INFORMATION ABOUT THE DONOR:
    Age: 24 years old (age at the time of the donation)
    History:
    – Family hereditary background: ABSENCE
    – Personal background with hereditary repercussion: ABSENCE
    Phenotypic characteristics:
    – Hair colour: BLACK
    – Eye colour: BLACK
    – Skin colour: MATTE
    Examinations:
    – General and mammary: NORMAL
    – Ultrasound scan: NO MEDICAL PROBLEMS
    – Smear test: NORMAL
    Analysis:
    – Haemogram: NORMAL
    – Basic biochemical: NORMAL
    – Coagulation: NORMAL
    – Serology: ABSENCE OF VIRAL OR BACTERIAL INFECTIONS
    – Genital culture for Gonococcus and Chlamydia: NEGATIVE
    – Karyotype: 46, XX
    – Psychological evaluation: NORMAL
    – Blood group and Rh factor: O POSITIVE
    – Body Mass Index (BMI): 25

    Im not sure what ‘Family hereditary background-ABSENCE’ relates to- possibly hereditary medical issues or ethnic background?
    In any case I know a tiny bit more now than I did before….Id still like to know her ethnic background and nationality.
    Thank you again Olivia for giving us some tools to get this information.

  14. Gillian Handyside says:

    Hello again,
    I’ve continued trying to obtain more info from Vista Hermosa Clinic but it’s really like pulling teeth.
    In the end, after the zillionth polite email, they gave me the donors’ occupations (unsolicited by me), which is nice. Yet they have refused to release the donors’ level of education for reasons I cannot fathom.
    And when I asked if I could have the other details those provided by Quiron– pointing out that it must be legal to provide this kind of information, otherwise Quiron wouldn’t do it so openly — I received a blunt, “Hospital Quiron does what it suits them and we do what suits us, both legally.”
    So I think that’s probably as far as I’m going to get with them, unfortunately.
    I suppose the law is so vague that clinics can pretty much do what they like but I’m curious to know why places like Vista Hermosa are quite so reluctant to release basic, non-identifying information when it’s entirely legal for them to do so. AND when they surely must realise that it’s in the DC child’s interest to have that data.
    I can’t figure out what their motivation is in being so secretive.
    Gillian

  15. Lucia Grounds says:

    Hi everyone,

    I am following you all with extreme interest here! I have donor embryo conceived twins via IVI Valencia (conceived in 2006).

    I too have tried writing several times with only one reply to the effect of “tough – age and blood group is all you are entitled to due to ‘Spanish data protection laws (!)”.

    I am heartened to see some small progress being made by persistent and polite pressure. I will now be following your example and trying to find out more.

    I am really interested in persuing this and maybe setting up (informally) a group so that parents of Spanish (and possibly other anonymous DE Euro countries?) can put informed and continuous pressure on the clinics.

    I will keep you posted on my progress and hope we can stay in touch to support each other through this process (and also give out helpful info. for others in this position?).

    Best of luck,
    Lucia Grounds

  16. Rachel Elangey says:

    Hi again,
    I did a quick survey amongst some members of a forum community to find out what information is given voluntarily at which clinic…..this is the result…

    EUGIN- blood type, age
    IVI (VALENCIA) -blood type, age
    CIRH (BARCELONA)-blood type, age, hair colour, eye colour, skin colour, height, ethnic origin, birth date, karyiotype, medical examanation results (virus, bacterial etc)
    PROCREATEC- blood type, age, hair colour, skin colour, eye colour, height, weight, proven fertility
    IREMA- age, height, weight, eye colour, hair colour, profession, blood type, any children, previous egg donation
    GINEMED (SEVILLE)- eye colour, hair colour, blood type, height, age, weight, nationality and ethnic origin (the last info given ‘under pressure’)
    Im contemplating how to get further information from my clinic: Id like to get ethnic origin, nationality and country of birth, any children, date of birth, profession.

    Am also interested in staying in contact somehow- keep me posted.
    Best

  17. oliviasview says:

    Thanks so much for this information. I am sure it will be valuable for many people. Do join DCN to stay in touch.

  18. Gillian Handyside says:

    Hello again

    I’d be intrigued to find out just how much information on donors Hospital Quiron actually gives out to patients.
    Maybe I’m just being over-cynical but there might just be a gap between what their website says in terms of what information they can provide, and what they actually do provide in practice. I’m only saying that because the hospital says the doctors give the information to recipients verbally, when the latter go for a consultation. That sounds rather informal to me.
    Perhaps I’m totally wrong and Quiron IS very open and complete. I hope so, as it’s a laudable approach and it sets a good precedent for patients trying to obtain info from other clinics.
    The reason I’m a bit doubtful is that the clinic I went to initially said (not wrote) that they could provide quite a lot of info (including non-medical, non-physical data like the donors’ levels of education and hobbies — which suggested they’d also be able to release failry complete medical and physical information, which is arguably more pertinent). But in the event, they weren’t very forthcoming at all.
    I wonder whether some Spanish clinics claim to release fairly extensive data on donors simply to attract patients from abroad. IVF is after all something of a growth industry in Spain and I suspect there is quite a lot of competition among clinics.

    The main problem, as I see it, is that the Spanish law on donor information is so vague that clinics can make it mean whatever they like. It just says “Donor-conceived children or their legal representatives have a right to obtain general information about the donors, excluding the latters’ identities.” (“Los hijos nacidos tienen derecho por sí o por sus representantes legales a obtener información general de los donantes que no incluya su identidad.”)

    How do you define “general information”?

    • Rachel Elangey says:

      Hi Gillian,
      I would imagine that ‘general information’ in this context would be similar to the definition of ‘non-identifying information’ used in the context of adoption searches-which would also vary from country to country and state to state.
      Personally I think the Spanish clinics who give out only blood group and age as info are just using the law as an excuse-it makes life easier for them if they dont have to justify their choice of donor to their clients (us)…..and vice versa. Which reminds me- I think donors also have a right to have ‘general information’ about us too!

  19. oliviasview says:

    I spoke on the ‘phone today with Dr Ramon Aurell from Hospital Quiron. It seems they do things a different way round there to the UK. Well before treatment begins all information about a donor, except for physical details, are sent to the recipient in writing. This would include, age, occupation, interests and hobbies, reasons for donating etc. Physical detail information is given after treatment because it is possible that the donor and recipient will find themselves in the same waiting room and the clinic do not want recipients recognising donors – or even looking for them – by knowing their physical features. This means of course that recipients have to trust that a good physical match is being made on their behalf.
    In the UK it mostly happens that recipients are told about or have a choice of physical features prior to treatment but are not given other details until afterwards – although the HFEA say they are entitled to them beforehand.
    Dr. Aurell was strongly influenced in his attitude to giving as much information as possible by the senior counsellor at the Hammersmith Hospital where he did his training in fertility medicine. He is in charge of the ‘overseas department’ at the Quiron, speaks excellent English and I know the counsellor concerned speaks very highly of him.

  20. Rachel says:

    Hello Olivia

    Thanks for this info about Quiron.
    I wonder if the fear of donor and recipients meeting in the waiting room is the real concern for all the clinics in Spain (at least those with one waiting room!). Perhaps this is why the clinics are so cagey about giving out information.
    When I think about it, my clinic was also very vague as to the precise moment my donor was to do the ‘egg recuperation’- they called me AFTER it had been done and gave me 24hrs to get to Barcelona! Probably another way of avoiding women stalking out their donors!

    Do you know if there is a Spanish version of the Donor Conception Network?

    Thanks
    Rachel

    • oliviasview says:

      Sadly, there is no Spanish equivalent of DC Network. In fact there is only one other organisation in the world devoted entirely to the well-being of DC families, and that is in Australia. Most countries have a general infertility organisation but few devote much space or time to egg or sperm donation.

  21. Jessy says:

    Hi, I gave birth to a wonderful baby girl a year ago. I got her as a donated embryo at Instituto Marques in Barcelona. At first they only gave me blood group and age of the donors. After I requested more information, they sent me en email with the age, blood group, hair color and texture, eye colour, hight and weight of both donors. I know some day my child will want more information and maybe even contact with siblings and donors. I keep thinking that we can help our children via conecting or even founding sommthing sinilar to DC Network where children in the future will be able to contact each other. Most of them will know the way they were born, when and where they were concieved. They might find each other. I am so willing to help my baby find what ever shi wants in the future.

    Sorry for my English not being perfect, but it is not my native languague

    • oliviasview says:

      Hi Jessy – Please don’t worry about your English, it’s really good. So very pleased to hear that Instituto Marques were willing to give you further non-identifying information about your donors. There is a psychologist there who is very keen on recipients of donated gametes being given more information but she has been struggling with the doctors at the clinic. I think this clinic may also be feeling the impact of the policies of Hospital Quiron, also in Barcelona, that gives full non-identifying info. The more requests that are made to Spanish clinics the more the doctors there are likely to begin to understand the needs of the children and to comply with their own laws to give this information.
      Quite a few people are interested in their children, conceived in Spain or anywhere outside the UK, having the possibility of making connections with half-siblings. This is likely to be harder to do with egg rather than sperm donation as egg donors may only donate once or twice and with an unknowable time lag between donations. Men tend to donate regularly over a fixed period of time. DNA testing would be necessary, but initial links between parents who conceived at the same clinic could be made through the American Donor Sibling Registry DSR), which accepts registrations from anyone anywhere in the world. As so many people in Europe have conceived in Spain a separate organisation is probably desirable but would need time, energy,commitment and money to set up. The DSR is already well established and well run by Wendy Kramer so I would suggest that this may be the most appropriate forum, at least for the time being.

      • Jessy says:

        Hi Olivia,

        Thank you so much for your prompt response. I thought that American DSR only covers people from the States. Well, I will contact them as well as DC Network. I do not know if my child will be intrested in making these conections some day in the future, but I assume she will be. I just want to be prepared to help her do it. As she is the only child, she basicaly has no one with genetic relation to her. I am afraid that this may affect her in a way that she will feel different, isolated, lonely.

        Thanks for the valuable information you gave me.

        Will keep in touch!

        Jessy

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