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Donor-conception: A complex journey

Since the late 20th century, the use of donor sperm, eggs and embryos as a solution to fertility problems has increased exponentially. These methods have allowed many who would have otherwise not been able to have children become parents. Many people conceived via donor gametes wish to determine their biological origins, whether that be for medical reasons, to locate potential siblings or simply to understand where they came from. But the journey to understanding your DNA is often anything but simple.

In this feature, we explore the changing laws that allow donor-conceived individuals to access vital medical information, the benefits to knowing your biological origins, and what to do if you can’t find the answers.

Changing laws

The use of donor sperm and eggs has increased significantly since becoming available in the late 20th century. The number of children in the UK conceived via sperm donation is now over 4,000 a year – tripling since the early 2000s – whilst the number of conceptions using donor eggs almost doubled in the decade between 2009 and 2019. Alongside heterosexual couples who are struggling to fall pregnant, this increase has been driven by a rise of those in same-sex relationships and single parents, who would otherwise be unable to conceive.

Whilst the use of donor gametes gives a gift of unmatched proportions to those wishing to conceive a child, the most important implications of this are on the child themselves. Prior to the 1990s, there was no official register of these treatments, and children conceived before August 1991 have no official record of their donor. In fact, parents using donor sperm and eggs during this time were often advised to hide the nature of the child’s conception from them. As such, many donor-conceived adults still do not know that their biological origins are not what they seem.

Of course, the decision to divulge your child’s origins is an extremely personal one, and DNA is certainly not the only determinant of parenthood. However, with the completion of the Human Genome Project and the advent of new genetic technologies, the importance of knowing one’s biological background was put in the spotlight in the 1990s and 2000s. This was exacerbated in the 2010s by the development of platforms such as 23&Me, which have been responsible for many individuals uncovering secrets about their DNA. It is well-documented that discovering you are donor-conceived at a later age can lead to significant distress, and as such, some nations began to put frameworks into place to ensure the wellbeing of donor-conceived individuals.

In 1991, the Human Fertilisation and Embryology Authority (HFEA) was set up in the UK to record all fertility treatments, including donor-conceptions. However, donors still had the option to be anonymous. In the wake of the genomics revolution, in 2005 the UK’s anonymity laws were changed to ensure that all donor-conceived individuals could obtain personal information about their biological parent when they turned 18. This ruling meant that anonymous donation, as had been common until the 1990s, was now illegal. Additionally, the Donor Conceived Register was set up to help those born pre-1991 to potentially find their donor parent, without needing to turn to direct-to-consumer testing.

With the 2005 law coming into effect this year as the first of these children turn 18, debates around the ethics of donor conception have made their way into the mainstream media. Thanks to the change in the law, these individuals are now entitled to not only medical information from their donor, but also personally identifiable information such as their last known address. But what is the real benefit of this, and why was it so important for the laws to change?

Medical history

One of the most important aspects of knowing your biological identity is understanding your medical background. We have all been asked by doctors if we have a history of a certain illness in our family, but what if you don’t know the answer?

By having access to the information about your donor’s health status, you can have a clearer picture of what your future might hold. This information can be vital for early detection, prevention and management of diseases and conditions that may run in the donor’s side of the family. Armed with information about potential genetic predispositions, donor-conceived individuals can make more informed decisions about their lifestyle, medical screening and health choices. Additionally, knowledge of genetic conditions within one’s biological family can be especially relevant when considering reproductive choices. It can inform decisions about pursuing genetic counselling, prenatal testing or assisted reproductive technologies if the individual chooses to have children of their own.

It’s important to note that most donor-conceived children will not encounter significant health risks due to their biological family history. However, the value of this information lies in its potential to empower individuals to take control of their health and make informed decisions regarding their wellbeing. It is also a reminder of the importance of open and honest discussions between parents and donor-conceived children regarding their genetic origins and medical history. In addition, studies have shown that donor-conceived individuals have the same risk of inheriting cancer-related mutations as those conceived traditionally. In light of this, those who do not know their biological parents generally do not need to worry about an increased risk of disease. However, the looming question mark can cause distress.

Many donor-conceived individuals have strong feelings about the medical aspects of their conception. Some feel anger that they lack much of the information about their health that most people are privileged to have by default, whilst others are less impacted by this choice. Overall, studies show that the majority of young people don’t have negative feelings about their conception. Of course, there are always exceptions. This 2021 article from the Guardian details a number of stories of donor-conceived individuals from Australia who have suffered trauma, often as a result of missing medical records and lies about their origins.

Navigating relationships

Aside from knowing your medical history, for many it is vital to know that they know their biological origins prior to embarking on romantic relationships. With consanguinity linked to a number of genetic diseases and some donors responsible for the conception of many children, avoiding embarking on a relationship with a close relative is crucial. Whilst it’s a tough conversation to have with a prospective partner, the new anonymity laws in the UK ensure that individuals have a better chance of finding their biological siblings, which can help to avoid this risk.

Despite knowing their donor’s medical history and ensuring that they are not related to their partner, many donor-conceived adults will still choose to undergo genetic testing before having children, be that in a clinic or through a direct-to-consumer route. This ensures that they do not pass on harmful variants that may not have emerged until later in life (after their biological parent made the donation). This could include conditions such as Huntington’s disease or myotonic dystrophies, which the donor themselves may not have known about.

A sense of belonging

Knowing your biological origins can also contribute to a sense of belonging for those who need it. For some, this is a mere curiosity. For others it is more; just because someone’s legal parents went through such a gruelling process to have a child, it does not necessarily constitute a happy relationship in the present day. A podcast series hosted by donor-conceived individual and comedian Laura High features episodes that explore this aspect of donor-conception, amongst other personal stories.

Even when someone had a happy childhood, they still may wish to seek out biological siblings, especially if they did not grow up with them. However, finding this biological background can be a tough journey for not only the individual, but also their recipient family.

There are a number of heartwarming stories of people finding their biological relatives after a lifetime of not knowing their background. One of these individuals is 22-year-old Rikke, who wrote a story for the European Sperm Bank detailing the journey of finding eight biological siblings, primarily through social media. Part of her motivation was curiosity and a wish to see her resemblance to her biological relatives. Whilst this curiosity was satisfied, she states that she doesn’t necessarily have a close relationship with all of the siblings; something that she thinks is okay. This story reflects that of a number of donor-conceived individuals, who may expect to automatically connect with all their sibling, only to be disappointed by the result.

On the other hand, some may have an overtly negative experience with finding their origins, and a number of donor-conceived adults oppose the practice entirely due to associated psychological trauma. Despite this, the overwhelming majority of these individuals still support the use of donor sibling registries that allow them to find and connect with relatives.

What if you can’t, or don’t want to, find out?

Some people may feel content with their recipient family and have no desire to find their biological parent. For others, it is an integral part of their journey.

But for some, there is no choice. With the change in donor conception laws coming into force this year, the importance of knowing your origins has been at the forefront of many news stories. However, many individuals who don’t know their biological parents have no way of finding out. This could be because they were conceived through an informal donation, adopted in a foreign country or simply have a single parent. For these people, the same issues about medical information and sibling relationships still stand, but there is no handy registry to obtain new information.

Some people in this situation find themselves going down an informal route to find answers. The most common method is to use DNA testing platforms such as 23&Me. Whilst these direct-to-consumer testing options may help you to identify family members and can indicate some genetic predispositions to disease, it is important to be cautious about the results. Findings obtained from these websites, such as the presence of cancer-related variants, can sometimes be presented without context, and, without support from someone like a genetic counsellor, these results can lead to undue distress. To truly understand your health status, you should always take advice from a professional. And should you choose to meet individuals identified as family members via a platform such as 23&Me, you should be aware that you may not always gain what you hoped for.

How to move forward?

Whilst it seems that many of the issues discussed above have new solutions, especially in the post-genomics era and in light of the changing laws in the UK, donor-conception can still be a tricky topic to navigate. Anonymous donation is still legal in many countries, but donor-conceived individuals, their recipient parents and many donors themselves are pushing to change this. In Australia, for example, one state has begun to retroactively remove anonymity, and some individuals think the practice should be banned entirely, encouraging prospective parents to adopt instead.

Whilst the true burden of these issues is on the child, many recipient parents have strong feelings on the topic and their choices weigh heavily on them. Mother Dorothy Byrne gave birth to her donor-conceived daughter in the 1990s, when fully anonymous donation was touted as the best way forward. She now regrets depriving her child of a whole side of her family, and, in light of the increased use of genetic testing, has called for anonymity to be scrapped in a 2022 article written for the Guardian.

But even retroactive removal of anonymity does not help the swathes of young people who, for one reason or another, have no way to access the information about their biological parent. With so much focus on the topic in the mainstream media, it can be hard to not feel scared and tempted to travel down an informal and sometimes gruelling path to find answers.

Ultimately, you should not feel less than your own person due to not having your biological parent’s name listed on a spreadsheet. However, should finding these answers be an integral part of your journey, there are a number of resources available to help you. There is no right or wrong answer.


Resources and further reading

The Donor Conception Network: https://dcnetwork.org/

We Are Donor Conceived: https://www.wearedonorconceived.com/

HEFA: https://www.hfea.gov.uk/donation/donor-conceived-people-and-their-parents/get-support-advice/

Donor Conceived Register: https://www.donorconceivedregister.co.uk/resources