Netherlands: Donorkind Protests Against Ads For Spanish Fertility Clinic

This week an advertisement appeared on Dutch TV for IVF Spain, a fertility clinic offering treatment with anonymously donated sperm and eggs: something which has been banned in the Netherlands since 2004.

It is not the first time that IVF Spain has directly targeted the Dutch market. Their website is fully translated into Dutch (as well as German, French and English), they advertise the use of anonymous gametes prominently, and they regularly hold meetings in the Netherlands for people interested in their services.

For Donorkind – the Dutch organisation representing donor conceived people – it is unacceptable for IVF Spain to advertise services which are illegal in the Netherlands. Everyone has the right to their genetic history. Knowing where you come from, and your medical background, is not a trivial point. It is an essential part of every person’s identity.

Donorkind therefore immediately took action. Together with the Donor Detectives we contacted many organisations and people in the Netherlands: politicians, the press, the Ministry of Health, Welfare and Sport, the Advertising Standards Association and the Children’s Ombudsman.

We expect any company advertising in the Netherlands to respect Dutch law, rather than offering ways to get around national legislation. Furthermore, it is important for prospective parents to realise that the promise of anonymity is merely an illusion.

In the current age of direct-to-consumer DNA tests (which are only growing in popularity), donor conceived people can discover how they were conceived with relative ease. If not told the truth by their parents at an early age, this discovery can lead to an identity crisis for donor conceived people and cause tension within the family.

Germany: New donor registry starts on 1 July

On 1 July 2018, Germany finally established a donor registry as the the Sperm Donor Registry Act (SaRegG – Samenspenderregistergesetz) became effective. The Act provides for a central registry, the Samenspender-Register, at the German Institute for Medical Documentation and Information (DIMDI) in Cologne, where doctors have to transfer identifying data about the donor and the mother as name, address, nationality, and place of birth. The sperm donor will be invited to leave additional information about himself for the child.

Donor conceived persons have a right to access information about their donor from 16 years of age. This is, however, not a minimum age as the parents of the donor conceived child can demand the identifying data for the child.The data will be retained for 110 years.

Spenderkinder, the association of donor conceived adults in Germany, welcomes the creation of a central registry where donor conceived persons can get information about their biological father. This is a step long overdue. Although anonymous sperm donations were never legal in Germany, doctors allegedly destroyed data on sperm donations after only ten years in the past.

Unfortunately, the registry has no retroactive effect, meaning that it will only retain data from sperm donations from 1 July onwards. This means that donor conceived persons conceived before this date will have to demand identifying information about their biological fathers from the fertility clinics. At least, the retainment period for such data was extended to 110 years. Accordingly, any destruction of data currently available is prohibited.

As a second point of criticism, the registry will neither provide information about donor siblings nor control that a single donor can only sire a certain numer of donor children. Also, the registry will not retain data about so called embryo donation.1

The Act also excludes the possibility to have the sperm donor declared as the legal father in order to protect sperm donors against claims for child support or inheritance from any children resulting from donated sperm. Although this corresponds with the legal situation in many other countries, there are serious concerns that the amendment violates the constitutional right of donor conceived persons to an equal treatment. Persons conceived „naturally“ are entitled to have their biological father also determined as legal father. It would provide sufficient protection for sperm donors to simply exclude any rights to support or inheritance.

  1. While egg donation is not allowed in Germany, the procurement of embryos whose biological parents do not longer want a child is a legal loophole. []

France reviews its laws on bioethics

Every 7 years, France has to review its laws on bioethics. The laws were last reviewed in 2011 so this year the law is due to be reviewed and so a debate has been raging in France since January: as this is France the controversies have, of course, turned into yet another national crisis. People from every background and discipline are engaged in a war of words in what we call the”Etats-Généraux,” in reference to our beloved revolution.

Nonetheless we donor conceived people believe that our country has never been so close to changing the rules about anonymity of donors. Most of our intellectuals and politicians now seem to be in favour of a system like the UK and with the developments in other European countries, France becomes more isolated every year. These facts weigh greatly on our progressive and Europe friendly president, Emmanuel Macron.

This summer France’s high bioethical council must issue a very important report on all subjects including access to the origins of donor conceived people in both the future and retrospectively. It is crucial that the outline of the future law must be discussed by parliament by the end of 2018.

Vincent Brès, président de l’association PMAnonyme

Issues regarding Donor Conception at UN event

On the 6th of March, Steph of Donorkinderen Belgium was invited by the European Centre for Law and Justice to come and speak at their event at the United Nations in Geneva. Other speakers were the British donor conceived Dr. Joanna Rose and professor Clotilde Brunette-Pons.

Steph did an awesome job – you can watch the video of her speech on youtube or read it on Donorkinderen’s website. You can also watch a video of Joanna’s speech “Respect my right to know my biological father”. 

Many thanks to the European Centre for Law and Justice for hearing them out. Let us hope that some day the voices of donor offspring will not only be heard at a UN side event, but in the main room.

Belgium: artist’s go-head to be legally recognized as king’s daughter could grant all children access to their true origins

On 3 February 2016, the Belgium Constitutional Court ruled that the right to know who your biological father is, is more important than the prevailing age limit of 22 years to revoke a paternity.  Steph, a Belgian donor conceived and President of Donorkinderen writes about the implications of the judgment on donor conceived persons in Belgium:

Delphine Boël was born on February 22nd 1968. She is the love child conceived during the alleged affair between her mother Baroness Sybille De Sleys Longschamps and former Belgian King Albert. It is claimed that their relationship lasted from 1966 to 1982.

At the moment of her birth, her mother was married to a nobleman named Jacques Boël. As legislation determines the names of the married couple were automatically put on her birth certificate. Delphine received his family name and is officially the only daughter of Jacques Boël. Her legal father has never revoked his paternity. The couple divorced back in 1987.

A number of years ago Delphine’s mother spoke candidly about the alleged affair in the TV documentary “Our daughter’s name is Delphine”. She talked about many things: about their first encounter, his visit on the maternity ward but also about the many times when he came over to spend time with her and Delphine. Their relationship ended abruptly. The Royal Palace rarely commented on this matter, but when they did they painted everything off as ‘gossip’.

However, during his annual Christmas speech in 1999 King Albert would, for the first time, vaguely admit to Delphine’s existence. He said: “Christmas offers each of us a good opportunity to reflect on our own family where we look back on the happy but also the difficult days. The Queen and I have remembered many happy times, but also the crisis that we as couple have endured, now thirty years ago. Together, we have managed to overcome these difficulties and for long we have regained a deep love and harmony. Recently we were reminded of this crisis period. We do not wish to talk about it. It belongs to our private life. However, should our life experience help or encourage others who recently experience similar difficulties, it would rejoice us.”

Over the years Delphine and her mother have been seeking official recognition that she is King Albert’s daughter, yet every attempt has failed so far.

Delphine is an artiste who studied at the Chelsea School of Art and Design. Currently she is living in London. Her artwork often refers to the denial she suffered by her biological father.

In 2013 Delphine went to the civil court to revoke Jacques Boël’s paternity. It is a first necessary step to be able and demand a paternity test of former King Albert in order to prove the kinship. By law Delphine Boël is too old for this to happen because this procedure has to be initiated before you turn 22 or within a year of learning that your parent is not your parent. The civil court passed the case to the Constitutional court.

On the 3rd of February 2016 the court has ruled on two important principles:

  • The court ruled that the right to know who your biological father is, is more important than the 22 year age limit and that, consequently, Delphine Boël need not comply with the legal age limit.
  • Possession of the state: to the outside world, Delphine Boël was always Jacques Boël’s daughter. According to this rule lineage cannot be disputed. The Constitutional court had to decide whether that rule is absolute.The court has ruled that this rule is NOT absolute and that knowing your true parentage is more important than existing family ties or the distress it will cause within other families.

On both principals the court ruled accordingly to the European Convention on Human Rights (ECHR). Delphine can now go ahead with her initial court case. Her legal father already did DNA-test that showed that he was not her biological father.

The ruling in this case can have huge implications not only for Delphine and her family, but it also urges for a total reformation of our current Family Law. At first it should allow all human beings to be granted recognition but also the possibility to know ones true biological ancestry regardless of the way it is conceived.

Secondly, in the verdict the non-biological connection causes a legal disconnection. This means that every child who has a non-biological parent on its birth certificate, can legally challenge this to obtain certainty about his or her biological identity.

The ruling can be also applied for donor conceived persons. For them the violation of their human rights occurs on three different levels. Not only does our government allow and facilitate third party reproductive treatments, it also deliberately denies donor-conceived offspring access and knowledge about their true ancestry. Our government even provides for their incomplete, and therefor incorrect, birth certificates. Basically this is fraud.

We want to urge our politicians to finally step up and take upon their responsibility by recognizing that there are a lot of inconsistencies in our current legislation. A new Family Law needs to be established in Belgium, in which the right of a child to know it’s biological identity is regarded as a fundamental principle. It is the only way to ensure legal certainty for all parties involved. If not great concern, distress and dramas will be inevitable. Parents themselves can also file lawsuits to contest the paternity. There are already lawsuits pending.

For those who think that Delphine started her lawsuit out of financial gain: that is not the case. She has got more to lose than to gain. No fortune is bigger than of Jacques Boël. By questioning his paternity she will lose her financial resources.

Delphine just wants to know where she comes from so she will finally know who she really is. She wishes no longer to be denied nor walk through life undefined. Every child originates from a biological mother and father. The recognition of ones origins should not depend on the (lack of) judgement of people who refuse to take their responsibility.

She aspires no fame, nor an iconic status. Since 2013 she has our complete support in her quest to be recognized by her biological father. Like no other we understand the pain that occurs when a fundamental question remains unanswered. It is suffering we share with illegitimate children, adoptees and foundlings. In a way you could say that we are all a bit Delphine.

#NousSommesDelphine

 

Statement by Donorkinderen, Spenderkinder and Stichting Donorkind against commercial surrogacy

The Parliament of Australia has established an inquiry into commercial surrogacy. Donorkinderen from Belgium, Spenderkinder from Germany and Stichting Donorkind from the Netherlands submitted the following joint statement today. Please note that this is not a statement by all members of DOE, as some member organisations have not decided on a public opinion on surrogacy yet.

We welcome the opportunity to present the view of European adults conceived by sperm donation to the Parliament of Australia on its inquiry into surrogacy. As donor conceived persons we have life experience what it means when commercial logic and commercial strategies invade ones most private and intimate relationships.

Commercial surrogacy should be outlawed

From the view of persons conceived with the help of reproductive technology, we think that commercial surrogacy should be outlawed in all countries and kindly ask the Government of Australia not to lift its ban on commercial surrogacy agreements.

While we acknowledge the pain of infertile persons, we do not think it gives them the right to rent another woman’s womb and to receive a baby – a human being, a person – for payment. There is neither a right to a child nor a right to be allowed to take all measures that are technically possible. The desire to have a child is understandable – yet there can be no justification to fulfill such desire at the expense of the interests of the child and mother.

1. Commercial surrogacy is a violation of the rights of the child

Commercial surrogacy basically means trading children for money. This is a violation of the rights of the child – solely for the fulfillment of a personal desire of someone else. In most cases, the surrogate – the birth mother – will receive no money for an attempt to become pregnant or pregnancy itself. She will only receive compensation for her “work” or “efforts”, if she hands over a child – in most cases, a healthy child.

If the legal system allows children to be traded – assuming that it will be to persons who will provide a loving home to them – it devalues the dignity of human life itself. The criminal codes of most countries prohibit all form of exploitation and trafficking of human beings. There is no reason why surrogacy should be considered as something different than child trafficking. Simply because the child was conceived in order to be given away directly after being born or because it may be genetically linked to one or both of the purchasers does not change this.

Australia has ratified the Convention on the Rights of the Child. Article 35 of the Convention provides that states parties shall take all appropriate national, bilateral and multilateral measures to prevent the abduction of, the sale of or traffic in children for any purpose or in any form. As a state party to the convention, Australia is obliged by international law to comply with this provision.

The law itself should not facilitate the deliberate breaching of the biological bond between mother and child. It is in the best interest of the child to be brought up by its birth parents. The children born by surrogacy will have to live with the knowledge that their mothers have intentionally given them away – in return for a financial consideration. No surrogacy contract can protect the child from the wrong done to him or her by being brought into the world in these circumstances. It imposes a fundamental injustice on those who don’t have an actual voice. Throughout various state and Commonwealth legislation in Australia, there is continual reference to the child’s welfare being paramount. However, commercial surrogacy fails to acknowledge this important principle by making the welfare of the adults superior which is hypocritical.

2. The intentional separation of mother and child after birth is not in the best interest of the child

Surrogacy intentionally severs the gestational link between the child and the natural mother. During the nine months of pregnancy, the baby connects with its mother through her voice, heartbeat, smell and flavors in the womb. This bond is consistently encouraged and promoted by medical professionals during “normal” pregnancies. To force the surrogate mother to emotionally seal off from the child so she can give it away and to separate them after birth goes against human nature and is not in the best interests of mother and child. It has also been recognized in the field of adoption that the welfare of the child is best served by being raised by its birth parents. This is the fundamental principle behind the national apologies made by the Commonwealth to the “Stolen Generation”, children from forced adoptions as well as child migrants. To promote and sanction commercial surrogacy would not be consistent with this ethos and apologies.

Studies show that the separation between mother and child is harmful for the child. Infants can endure a deep subconscious trauma because they were removed from the person that offered them protection and security. There is a study that implies that children through surrogacy are more likely to suffer from a depression than children who grew up with their birth mother.

3. Commercial surrogacy means a commercialization of all areas of life

Surrogacy enforces the commercialization of all areas of life. Everything becomes a good that can be traded, even a child: it is considered as a good that can be ordered, planned and selected.

The fact that children can be ordered attaches conditions to that very child. This is demonstrated by the infamous Baby Gammy case – intended parents who left “their” child behind due to the fact that it was not in perfect health.

It also means that the surrogate mother and the baby become disposable. In the United States, an intended father reportedly tried to force a surrogate mother to abort one of the healthy triplets she was carrying for him because he did not want three babies. When she refused, he threatened to financially ruin her by imposing monetary damages for breach of contract.

The (multinational) fertility industry is fully aware of the market value of gametes, wombs and children. A prior lucrative business is built on the desires of intended parents. This sector earns vast amounts of money from selling options to people in despair, advertising the idea that the unreachable is reachable when nature can be tricked. They are the interest group pushing to legalize commercial surrogacy so they can expand their market opportunities.

4. Commercial surrogacy exploits women

Commercial surrogacy is directed against the dignity and the integrity of women, because the body of the surrogate mother is instrumentalized for reproductive measures. Women are downgraded to their prehistoric reproductive status.

Surrogacy also opens the door to abuse and exploitation of poorer population groups. It is a known fact that the international trade in surrogacy exploits poor women in developing countries. It is, however, not obvious that legalizing commercial surrogacy in Australia would change that. The income disparity may not be as great as between purchasers from Western state and a surrogate from a developing country, but experiences from the United States show surrogacy is typically only an option for poor and less educated women. These unequal transactions result in consent that is under informed if not uninformed, low payment, coercion, poor health care, and severe risks to the short- and long-term health of women who carry surrogate pregnancies. Subsequently the surrogate’s own autonomy is adversely affected. Also, surrogacy inevitably generates discrimination – in many cases, it is the poor who have to sell and the rich who can afford to buy.

There is a reason for the fact that only very few women in Australia are willing to enter into an altruistic surrogacy agreement. A pregnancy is an emotionally and physically challenging situation. Being pregnant for someone else implies availability and implications for months in their private life, health and work. Also, surrogates are often over stimulated and carry multiple embryos. Accordingly, the main reason to consider surrogacy is money, only sweetened by the idea that they can make another person very happy by giving them a baby.

It is against various Australian legislation and guidelines to pay people to donate blood, organs, or even gametes. Commercializing surrogacy would be against the altruistic and non-coercive nature that Australia upholds.

The medical process for surrogacy entails risks for the surrogate mother as Ovarian Hyper Stimulation Syndrome (OHSS), ovarian torsion, ovarian cysts, chronic pelvic pain, premature menopause, loss of fertility, reproductive cancers, blood clots, kidney disease, stroke, and, in some cases, death. Also, women who become pregnant with eggs from another woman are at higher risk for pre-eclampsia and high blood pressure. Pre-eclampsia is a leading cause of maternal and fetal morbidity and mortality. Recently, a US surrogate died due to the complications of a pregnancy.

Babies born through the use of another woman’s eggs, as is the case in surrogacy, have been shown to suffer greater incidences of being born of low birth weight and prematurely when compared to those conceived in other IVF procedures in which those babies are already suffering higher incidences of poor outcomes than the general population. These poor outcomes are then associated with poorer outcomes in later life such as heart disease and diabetes. Subsequently, surrogacy creates a class of people whose health will fare worse in adulthood and provide a greater strain on the public health system.

5. Surrogacy is messy

As several lawsuits in the United States prove, surrogacy agreements are messy. There will always be cases where the intended parents will try to back out of the arrangement, demand an abortion from the surrogate or abandon the children after they are born. It is more likely that a pregnancy that is not lived by the intended parents themselves but outsourced to another person facilitates this kind of behavior. On the other hand, there may also be surrogates who develop maternal feelings towards the child and would like to keep it.

If Australia is to legalize commercial surrogacy, it will leave its courts with complicated and highly emotive situations to resolve. Is the country really willing to force a mother to hand over her baby to the intended parents – as has recently happened in the UK?

6. There is no reason to legalize commercial surrogacy

In our opinion, the argument that “commercial surrogacy will happen anyway, if not in your own country then in other countries under even worse circumstances abroad“ is not a valid one. Giving in to these arguments means a capitulation in face of an internationalized way and to abstain from any will to shape a political agenda at home. There will always be countries with less strict laws. At the same time, there will always be people wanting to commission a surrogate overseas, simply because it will be cheaper than a legal commercial surrogacy in Australia.

Absurdly, supporters of surrogacy are taking hostage of the misuse of foreign commercial surrogacy agreements and make it sound as if it was a moral imperative to allow surrogacy at home because it will protect the surrogate mothers and the rights of the children born. There is, however, no ‘ethical form of surrogacy’. Under the false assumption to impose strict conditions, Australia would neglect the responsibility to protect the weaker parties involved: the mother and the child.

The contrary will be the case if commercial surrogacy is legalized – more surrogacies will take place, and the ideal will prevail that wombs can be rented and children can be sold and bought.

7. The appropriate answer to the misuse of surrogacy abroad is to tighten measures against commercial surrogacy agreements abroad

The argument that surrogacy will happen abroad if it is not regulated at home also does not recognize that typical countries for surrogacy tourism like Thailand and India have recently tightened their laws and basically banned foreigners from surrogacy agreements. This means that these countries are well aware of the precarious situation of surrogates and children born through surrogacy and acting on it. Therefore, it is difficult to understand why Australia is even considering to lift the ban on commercial surrogacy.

To allow a more “humane, regulated form” of surrogacy will not stop indented parents to buy children through other channels. Even more: it will only give the other forms of surrogacy leverage to be pushed through. And of course children – like Baby Gammy – who do not come up to the expectations of the commissioning couple would still be at risk of abandonment.

Especially after the experiences with Baby Gammy the right course of action should be to tighten measures on the ban of commercial surrogacy. In our opinion, this means introducing and enforcing a ban on commercial surrogacy agreements in other countries, for example by fining persons who enter into such agreements and by prohibiting all advertising for and procurement of commercial surrogacy agreements.

Please donate to take a French case on donor anonymity to the European Court of Human Rights

L’association PMA : Procréation Médicalement Anonyme (PMA), the French organization of donor conceived persons, calls for donations to take a legal action to the European Court of Human Rights (ECHR) in Strasbourg.

PMA supports the basic, fundamental and universal right to access to one’s origins (to get information about your ancestry, biological parents and siblings). In France, donor conceived persons are without rights: donors have an absolute right to anonymity, it is a crime to reveal the identity of a donor, the donor may not even waive his anonymity out of his own will, and private DNA tests are forbidden (for more information about France see our country report).

Audrey Kermalvezen, a lawyer who specializes in biotechnology and member of PMA, was conceived by a sperm donor in 1979. In 2010, Audrey initiated a legal action in France in 2010 with two requests :

  • getting access to non-identifying data (number of her siblings, medical data, possible death of her genitor)
  • that the French hospital where the sperm donation took place asks her genitor (the sperm donor), provided that he is still alive, if he agrees to reveal his identity.

On 12 November 2015, the Conseil d’Etat, the highest French administrative court, dismissed Audrey’s claim. In its judgment, the court found that the anonymity of sperm donors, as provided by French law, is not incompatible with the European Convention on Human rights, and that the rule of anonymity meets the objective of protecting the donor’s private life.

Audrey and PMA now intend to take her case to the European Court of Human Rights. Such action is only possible every possible legal instrument at national level has been exhausted. The chances of a success are not too bad: The right to know your genetic ancestry is protected by the European Convention on Human Rights as part of the respect for private life in Article 8. In the Godelli case, the ECHR decided that the Italian law on anonymous adoptions violated Article 8 of the Convention because adopted persons did not have access to any information about their mother and birth family that would allow them to trace some of their roots, while ensuring the protection of third-party interests. Also, Italian law did not attempt to find a balance between the competing rights of adopted persons to find out their origins and the mother’s interests in remaining anonymous, but blindly preferred the latter.

The practice of anonymous gamete donations is similar to the Godelli case, as donor offspring cannot obtain any information about the donor, neither identifying nor non-identifying. In addition, donor offspring cannot ask the donor if he or she is willing to waive his or her anonymity. (Read more about the impacts of international law on the practice of donor conception)

A judgment by the ECHR banning absolutely anonymous sperm donations would affect all member states of the European Convention on Human Rights. Additionally to France, Belgium, Spain and the Czech Republic still provide for anonymous donations. A success would be a huge leap forward for all donor conceived persons and their right to know their genetic origins.

To be able to fund the action, PMA and Audrey ask for donations to be able deposit an action before 12 May 2016. Audrey and PMA say that even 5 or 10 Euros would help them, so please support them, if you can. Thank you for your help.

Stichting donorkind starts online campaign to register at DNA databank

Stichting Donorkind, the organization of donor conceived persons from the Netherlands, is starting an online-campaign with two clips. One to call on donors to register at the DNA-databank from Fiom and one doing the same for donor conceived persons.

The English Translation of the spoken text is:
In the 80’s I helped parents with their wish for a child. Then anonymous donorship was normal. Because it was long ago I didn’t think about it any more.  Then I saw a tv-show and realized that it can be very important to know who their donor is.  I decided to give up my anonymity and register at the Fiom DNA-databank.  Untill now there are two matches, two biological daughters. I helped their parents, then why not the children.  Help too, register at Fiom and visit Donorkind on their webpage of facebook.

Inspired by the campaign, a TV network will air a show with a donor and his daughters in January to tell about the good experiences to meet his donor-children. Also, Spoorloos, a dutch TV-show that searches for lost family members, will feature the search of a group of donor conceived half siblings who think their donor (who is also known) fathered up to 200 children.

Donor conception: Yes we can, but maybe we shouldn’t

On the 3rd November Steph, member of donorkinderen Belgium, attended in London the conference “10 years since the end of donor anonymity: have we got it right?”. This is the report she originally wrote for the website of donorkinderen:

In 2005 the government of the United Kingdom decided to implement a change in the law so that humans who are conceived with the genetic material of a third person, get access to basic and fundamental information about themselves: knowledge on their biological parent(s) and siblings. All the speakers at conference agreed unanimously that it was the correct decision to abolish the anonymity of donors.

At first glance, the policy in Britain seems a perfect example that could help Belgium finally modernize but also humanize our policy. They seem to have everything: right to filiation, registry, DNA database, a huge support network, research, better guidance for children, parents and donors, donor families, …

At the conference we looked for the answer on the question ‘have we got it right?’. The answer on this question has many layers. Each speaker tried to answer by sharing the knowledge that was collected over the last 10 years.

We were told how precautious and negative the fertility clinics were when the government decided to change the law. Many of them claimed prophetically that it would end the possibility of intended parents to have children because no donors would agree to donate on the term of being identifiable.

Their fears turned out to be totally unfounded: not only was there an increase in the number of sperm donors, the amount of egg donors has also risen.

Due to the social tendency of single women and lesbian couples wanting to have children, a huge increase on demand took place. Because the demand is lager than the available national supply, 1/3rd of the sperm in the UK is imported. Most of it is imported from American sperm banks (in perspective: for many years Belgium has a decline in the number of donors. 60% of sperm that is used in my country is imported from abroad).

The HFEA (Human Fertility & Embryology Authority) notices an increase in the number of donor offspring that want to know who they descend from. There are also more and more donors that are changing their anonymous status into identifiable (men and women who donated before 2005).

But donor conception is more than just what facts & figures on trends and conducted research. It is an ethical debate, one that human society forgot to have before we started with such treatments.

Dr. Joanna Rose
The person who tried to answer the ethical part of the question was Dr. Jo Rose. Jo is a British donor conceived adult. She was conceived in the 1970s with some anonymous sperm from a sperm bank. When she was 8 years old she was told that she was donor conceived. That meant the realisation of an unknown biological father and potentially hundred half siblings out there.

Jo started her speech with telling us about a her dear friend: Narelle Grech. Narelle, an Australian donor conceived, was looking for her biological father for the half of her life.

The young woman got cancer, but nevertheless continued to search for him. When she almost gave up on life and hope of finding him, the prime minister of Victoria, Australia heard her plea and stepped in. He made it possible for them to get in contact.

From the moment they met there was mutual and true connection. Narelle would only live for 6 weeks after their first meeting. The little time she had left she would spend with him. She passed away gratefully but also with regret because of not having him sooner in her life. A part from the exceptional bound they shared, knowledge of hereditary diseases could have helped her cancer to be detected sooner so she could have lived longer, maybe even not die from it.

Jo then shared her own story: how being donor conceived had had an inevitable impact on her life, identity and family. She told us that when she became an adult she decided to file a lawsuit to challenge the fundamental injustice that has been done to her.

It was a lonely and hard battle which HFEA, the fertility industry, a lot of doctors, ethicists, professors but also parents organizations were hoping that the struggle would wear her down so that she would eventually give up.

Lawsuit
The lawsuit lasted seven long years, as well as half of her savings, when the judge ruled in her favour. The ruling stated that ‘donor offsprings’ access to information about a biological parent goes to the very heart of their identity and make-up as people’ and that ‘an AID child is entitled to establish a picture of his identity as much as anyone else’.

This case led to a change in the law, which made the provision of anonymous donor conception in UK clinics illegal and let to the establishment of the gene library and registry service to address the identity loss and confusion already created.

PhD
In 2009 Jo Rose completed a PhD called ‘A critical analysis of sperm donation practices’. Her PhD gives an independent picture on what took and is taking place, analyses and formulates substantiated conclusions.

Her research shows that donor conception goes against the best interests of the child where the direct implications can be very harmful as well as inevitable. A potential trauma is inflicted, one that can affect a human being’s life and passed on to other generations.

Her conclusions are damning for the current British ‘ progressive ‘ policy:

  • It is in the best interests of a child that it can raised by its biological parents or family. Donor conception generates a direct conflict with this specific interest because it deliberately withholds the child from being raised by both of its biological parents as well denying it the possibility to built a meaningful relationship with them.
  • The right to lineage for donor conceived is endorsed in the law, but not automatically granted nor guaranteed. Parents can conceal its actual origins from the child. If a child is not told, there is a little change it will ever know. That is unfair and unjust. The government has a responsibility to grant the truth about their origins towards the children that were created through fertility treatments with donor gametes.
  • Birth certificates do not reflect the truth about the child origins. Not putting all, incorrect or partly information on it, is a form of forgery.
  • Donor conception comes forward due to the demand of intended parents with a desperate desire of having a child and an industry that makes money out of this. There is a huge conflict of interest due to the fact that the best interest of the child is inevitable undermined by it.
  • The suffering of infertility or incapability to procreate is officially recognised. A huge support network has been established: either independent initiatives or by clinics. Some of those are financially supported by the government. On the other hand the suffering of donor conceived is still not being recognized, nor efforts were made to acknowledge this or actually to do something about it.
  • There are millions of pounds/euro’s/dollars/dineros pumped into the industry: fertility techniques, counselling for parents, aftercare, choices, research … donor conceived in UK are only offered 2,5 hours with a counsellor.
  • In other words: there is money to create donor conceived but when it comes to take any responsability or accountability for the direct consequenses that is being inflicted on them, hands go up in the air.
  • No donor conceived are represented on the Board of the HFEA. Seats are assigned to professors, parents organization and people of the industry.

David vs Goliath
In contrast to the other speakers, Jo was the only one there defending a basic human right and addressing an injustice. She spoke from the heart and was there not because she happened to be working in a business that is linked to donor conception.

Some people in the room found her speech or interventions afterwards too emotional, sometimes a bit aggressive. But most of audience listened and understood the message: she made some good valid points. There were a lot of donor conceived adults, as well as parents, in the room who posed sincere and critical questions, but also expressed their support for Jo.

It is not often that donor conceived are invited to talk at conferences or debates. Often they are organized by the industry or organizations linked to that industry. People have difficulties to hear critical input that could point out the contradictions, conflicts of interests and the actual effect it has (or could have) on human beings that are conceived that way. Most of time they want to hear the ‘happily ever after’ and not ‘the inevitable potential devastating implications’ on the offspring. It would ruin the image that is forced upon us every time a leaflet of a perfect baby is handed over, when treatments must be advertised.

We experience the same thing in Belgium: the industry/clinics rather invite professors linked to the industry to talk about donor conceived offspring, rather then giving them the opportunity to speak for themselves.

It is absurd to notice that those who dare to speak up, or look critically at the policy are being treated poorly. Those who stand up do it most of the time completely for free: in their spare time, or take leave, invest their own money in the belief that a part from the occasional mistreatment, they will be able to make a difference for other donor conceived, donors and parents. It is almost undemocratic that victims without any support from their government must fight this hard not only to address the issues, but simply to be heard.

On my way back home I took the Underground and I came across a poster with a picture of a baby and the slogan “Sometimes nature needs a helping hand. Give yourself the best chance. The Fertility Show.”

-Big sigh – Yes indeed … their show must go on.

But at least I made some really nice friends and allies. Wait until if you discovered what we have in store.

Steph
Stephke.r@pandora.be
@donorkinderen

p.s.: Jo wanted to start her presentation with the song that a German donor conceived, Kevin Staudt, wrote. She wasn’t able to get it played, nevertheless I want to share it with you.