Children of sperm donors demand to know their origins: "A company is hiding my genetic information."

BarcelonaMiquel Roura has spent hours and hours researching genealogy platforms where users can post the results of a DNA test to find matches with other people. When there is a "match "Genetic" websites allow you to locate people with whom you have some degree of consanguinity and thus reconstruct your family tree.. For him, this is not a simple hobby of genealogy, but the only way he has found so far to discover his genetic origins. "Genetic information," he criticizes. As an example of the effects this has on his daily life, he explains: "Those of us who are parents often find that in pediatric consultations we are asked about our family history. I have to say that I have no knowledge." A proposal to modify the state law on assisted human reproduction. Judicial action to force a reform that would allow knowledge of genetic origins and that, they clarify, would not imply a legal link of paternity with the donor. Regarding 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 say what the donor studied or what their job was." On the other hand, he complains that in other cases, the clinic "does not even provide the risks of the company; it must provide this information. "It's up to each company, and in practice, the minimum requirements the law gives us aren't even met," he criticizes.

Furthermore, it's their mothers who can make the request, not the donors themselves. "The offspring has no right to make claims. We may be over 30 and have been born in that clinic, but to them we're nothing," Roura adds. This is because "in countries where the donor's identity is revealed, children cannot legally claim paternity" in the legal sense, so they don't have the obligations that a father or mother has toward their offspring.

The vice president of the Bioethics Committee of Catalonia (CBC), Núria Terribas, points out that ending 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 to a donor could 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 donor-conceived people.

However, the clinics' position is firmly in favor of maintaining anonymity. In a 2019 document, the Spanish Fertility Society (SEF) attributed Spain's "leadership" in the assisted reproduction sector to the protection of anonymity. The same entity indicated that 20% of gamete donation treatments performed in Spain are for foreign patients, illustrating the high demand for Spanish clinics. Among its arguments for maintaining donor anonymity, it states that "from a psychological perspective, attachment is formed in the early stages of life," and therefore believes that if the role of parents is "threatened" by that of a donor, this "can have 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 is already considering escalating the case 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," says the lawyer.

The state 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, Roura points out. "They don't want to give us any identifying information about the donor, but that implies that they also didn't have the right to protect them with anonymity, because at that time there was no legal framework stating that donations had to be anonymous," he adds.

Would it cause donations to fall?

Both spokespersons for the Association of Daughters and Sons of Donors and specialists consulted by ARA agree in pointing to economic interests as the reason explaining 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," Roura summarizes. 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 would not 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 recovered with a different donor profile, older people who perhaps had already had children and wanted to help."

Spain, one of the "favorite destinations"

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 figures are 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 things 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. In addition, healthcare here has a certain prestige and there are many infrastructures, including tourist ones, that organize packs reproductive. If you go to a good clinic in Barcelona, ​​they offer you a pack with a translator all week and then a couple of days to a coastal destination," he adds.

Genetic diseases and DNA testing

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 one's 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, you 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.

How is it regulated in other countries?

The UAB law graduate has also studied the laws of different countries on assisted reproduction and its relationship with the right to know one's origins. "I want to," says Igareda. The reason is that "they have interpreted the obligation to do so in accordance with the Convention on the Rights of the Child," she asserts.

The jurist also points to a change in social opinion: "All these boys and girls who have been born thanks to assisted human reproduction techniques are now adults who are not adopting." In this sense, she believes that "the Spanish case is unusual because the debate is not at all lively, while in other countries it is on the table and is a topic present in public opinion."