"Finding out at 37 that we were the daughters of a sperm donor was very traumatic."

Barcelona/PalmaMallorcan Henar (fictitious name) was 18 years old and studying Biology when she saw a report on television about the first Spanish doll conceived through fertilization. in vitro. Then, out of curiosity, she started talking to her mother about the subject and said, "We also conceived you through artificial insemination." But she assured her that they had used her father's sperm.

Nineteen years later, while they were having a conversation about assisted reproduction methods, her mother "let slip" that the sperm they had used in the process was from an anonymous donor. At that time, Henar still didn't know that her mother had Alzheimer's. "I felt cheated. I got really angry with her because when she told me, it seemed like she thought I already knew. The things she was telling me didn't make sense. So, I asked my father and he admitted it to me," she says.

According to Henar, the parents were "very" embarrassed to resort to this method. "These things weren't so normalized before, and my mother's family was very religious. Only her siblings and my cousins knew, and no one on my father's side ever knew," she says. She hadn't known before either because it wasn't listed anywhere.

"Finding out at 37 that we're the daughter of a sperm donor was a very traumatic experience for me," Henar confesses. "They tell you when you're already a fully formed person, with ideas about who and what you are, and they turn everything upside down from one day to the next. I've had to go through a genetic grieving process alone, as if a part of me had died. I looked at myself in the mirror and found it hard to recognize myself," she recalls.

She criticizes the fact that they kept it from her. She considers it "irresponsible" on the part of her parents and asserts that they created "a trauma" for her. "When you have a child, you have to accept the consequences and understand that there are things that, even if you don't like doing them, are up to you. Do you have more right to be a parent, or does your child have more right to know their origins?" she asks. She also doesn't understand why only the private clinic where her parents conceived her can have the details of who her "parent" really is, as she calls it. "I don't see the point beyond a financial issue," she opines.

As an example of the effects this has on her daily life, she explains: "For 37 years, when the doctor asked me if I had a history of illnesses, I would answer that my father had lung cancer and that his brother had schizophrenia. And now it turns out that none of this affects me." On the other hand, she admits that she sometimes wonders if some of the people she's had sexual relations with could be related to her: "It's not a DOC. I know two brothers who went to the same school and didn't know it."

Although she has never asked the clinic for any information about her father because she knows they will "make a lot of effort" to tell her, she did send a saliva sample to an American company to find out the origin and whether or not it had a match with her genetic bank.

Henar is also a member of the Association of Daughters and Sons of Donors, created at the end of 2022 and promoting a proposal to modify the Spanish law on assisted human reproduction. One of their demands is to eliminate the anonymity of gamete donors, so that those born from these donations have the option of knowing their origins and whether they have siblings from the donor. So far, the legal reform proposed by the association has been met with opposition from all political parties. Therefore, they are considering opening the courts to force a reform that would allow genetic origins to be known and that, they clarify, would not imply a legal link of paternity with the donor.

One of the founders of the association is Maria Sellés, who criticizes the fact that many assisted reproduction clinics make "excuses" for not providing non-identifying information about the donor, which, according to the law, children of donors can access. Based on the experiences of more than a hundred people who have joined the association, Sellés explains that "some clinics provide information such as skin color or blood type, others go further and even state what the donor studied or worked for." However, he complains that in other cases, the clinic "doesn't even provide medical history," even though the law establishes that, in life-threatening cases, the company must provide that information. "It's up to each company, and in practice, the minimum that the law allows us isn't even fulfilled," he criticizes.

Furthermore, it's their mothers who can make the request, not the donors themselves. And it's important to keep in mind that in countries where the donor's identity is revealed, children, by law, cannot claim paternity in the legal sense, so they don't have the obligations that a father or mother does have towards their offspring.

The vice president of the Bioethics Committee of Catalonia (CBC), Núria Terribas, points out that eliminating donor anonymity, as proposed by this association, would also prevent the possibility of someone not discovering how they were conceived until adulthood, or even never knowing. "If the parents don't tell them, there's no way the person born from a donor can know. It doesn't appear in the medical record, or in the Civil Registry, or anywhere," warns Terribas, who laments the secrecy surrounding these conceptions. "In the past, this also happened with adoptions. It was covered up, and it's worse," she says. Continuing the parallel with adoptions, she adds that in the case of adopted people, the right to know their origins has been recognized, and believes it should be regulated so that the same applies to people conceived with donors.

Maintaining anonymity

However, the clinics' position is firm in favor of maintaining anonymity. The Spanish Fertility Society (SEF) already attributed Spain's "leadership" in the assisted reproduction sector to the protection of anonymity in a 2019 document. The same entity indicated that 20% of gamete donation treatments performed in Spain are for foreign patients, illustrating how in-demand Spanish clinics are. Among their arguments for maintaining donor anonymity, they point out that "from a psychological perspective, attachment is formed in the early stages of life," and therefore consider that if the role of the parents is "threatened" by that of a donor, this "can lead to negative consequences for the family."

Legal Path

Lawyer Maria Vila is advising the Association of Daughters and Sons of Donors on possible legal action they can take against the reproductive industry to force clinics and sperm banks to stop shielding donor anonymity. So far, there have been complaints filed directly against the clinics, but there is no legal precedent in Spain. Aware that these are likely to be unsuccessful, Vila already envisions the possibility of going all the way to the European Court of Human Rights (ECHR). "The ECHR is very clear that knowing one's origins is part of Article 8 of the European Convention on Human Rights: everyone has the right to respect for private and family life," the lawyer states.

The Spanish law on assisted human reproduction was passed in 1988 and guarantees that people born as a result of gamete donation can access non-identifying information about the donor, including medical history in life-threatening cases. However, the association has recorded several cases of obstacles and impediments to obtaining this documentation. Access to non-identifying information was restricted in 1988, leaving a "legal vacuum" for people born through assisted reproduction before that year, Henar points out. "But I was born in 1985, and they don't give me any information. I don't understand why the law isn't retroactive. I don't ask for the donor's family history either, but they do give me a minimum of information," she adds.

Would donations decrease?

Both spokespersons for the Association of Sons and Daughters of Donors and specialists consulted by ARA agree in pointing to economic interests as the reason behind the assisted reproduction sector's reluctance to end donor anonymity. "Anonymity is the cornerstone of this business, which is why they want to protect it," summarizes the son of a donor from Catalonia. Noelia Igareda, a doctor of law from the Autonomous University of Barcelona (UAB), agrees. Her research has found that in countries where donor anonymity has been abolished, there has been a decrease in donations, which would explain the sector's reluctance. "Many people wouldn't donate if there was a possibility that at some point it would be known that they had given."

Faced with this, Terribas asks: "What do we value more? The rights of people born or the business of the clinics?" He also points to the case of the United Kingdom, where donations fell when donor anonymity was eliminated, "but then rebounded with a different donor profile, older people who perhaps had already had children and wanted to help."

Spain, a "favorite destination"

Spain is "one of the favorite destinations" for fertility treatments, according to Igareda, and "the number of babies conceived through assisted reproduction techniques increases every year; the latest data is around 12%." Furthermore, she asserts that no country in Europe can compare with Spain in terms of the strength of its assisted reproduction industry. For example, she points out, egg donation is not permitted in many countries, while it is in Spain.

One of the aspects that makes Spain so "attractive" is that, "if you pay, there are no waiting lists," Igareda asserts. Furthermore, healthcare personnel are authorized to search for phenotypic similarity between donor and recipient. "For people from other European countries, it's attractive to search for eggs from white, European women. Furthermore, healthcare here has a certain prestige and there are many infrastructures, including tourist ones, that organize reproductive packages," she adds.

Genetic diseases and DNA

Terribas, also a jurist specializing in bioethics, warns of the risks of not knowing that one is a donor's child. "If you have a serious health problem, which could be genetic, and you were born from a donor, you could be harming yourself because you'll ask the doctor to perform genetic testing on your parents," she warns. She also warns that it can lead to "conflictual situations if the parents haven't wanted to explain the situation and the children have to search for genetic origins."

Igareda explains that this situation could happen more frequently given the fact that "it's becoming easier and cheaper to get a genetic test" to investigate origins, even out of curiosity. Furthermore, there is increasing information about genetic diseases, and these types of tests are also performed to rule out medical complications. "Imagine that you do this, compare it with your parents, and it turns out you have no relationship with them. Or that you are diagnosed with a genetic disease and then you realize you have nothing to do with them," she warns.