Sperm and Egg Donation and online DNA Testing – Information for Donor Conceived People

Online DNA testing, sometimes called ‘direct-to-consumer genetic testing’, is an online service available direct to the general public for a fee.

People use these services to search for their ancestors, to search for genetic relations, or because they are interested in exploring their heritage or are seeking medical information about themselves.

The company providing the service analyses your DNA using a saliva sample. The information you receive depends on the company, as each offers different services.

These may include reports on personality traits, health risks or genetic predispositions to certain conditions, wellness insights, ancestral origins, and matches with genetic relatives—people who share some of your DNA.

Online DNA testing services: These are run on a commercial basis by private companies (such as Ancestry, 23andMe and MyHeritage DNA).

Each company’s service will have its own features, terms and conditions and privacy policies. These terms and conditions, and privacy policies, will differ depending on the provider and you should read these carefully before deciding which (if any) you are most comfortable using.

At the end of this page, you can find links to resources that give information on what to consider when thinking about using an online DNA testing service.

You will need to set up an account with each provider with a username and password and the results are then delivered via your online account.

Some people who are looking to identify genetic relatives using online DNA testing do tests using more than one provider, as they feel they are more likely to find genetic relatives. Some genetic genealogists have supported this approach.

AncestryDNA has a DNA database of over 27 million people. 23andMe has a database of about 15 million people. You have to do a test directly with each company, but you can upload existing data to FamilyTreeDNA and Living DNA to maximise your chances of finding relatives.

Online DNA testing is more popular in the UK, Ireland, the US, Canada, Australia, and New Zealand than in many other parts of the world. If your ancestry is from countries that are less represented in these databases, such as Spain, or from certain ethnic backgrounds, you are currently less likely to find strong DNA matches.

More information is available from the International Society of Genetic Genealogy (see resources below).

As well as online testing, for historic donors in the UK, there is the Donor Conceived Register which is for donors and donor conceived people conceived or donating before 1st August 1991. This is not a commercial service. When you sign up to the Donor Conceived Register, operated by Liverpool Women’s Hospital, you provide a DNA sample which is tested at the DNA Analysis Lab at Kings College London.

The tests used for this service are different from the tests used by the commercial DNA companies. They test a very limited number of markers and can sometimes produce false positive or false negative results. The main objective of this service is to match donor conceived people born from pre-1991 donations to the donor and to their donor siblings.

This DNA database is not a publicly available commercial service and not linked to any others – meaning people will only find a match if the donor, donor conceived person or a donor sibling also submits their DNA to the Register.

When using an online DNA testing service, it is important to remember that you are providing personal data to a commercial entity and to understand the potential privacy risks associated with use of these services. Before deciding to use one of these tests, it is recommended that you read the company’s Privacy Policy and think carefully about what you feel comfortable with.

For example, you may wish to consider whether the company will share your data with third parties and what happens to your data if the company is sold to a new owner. We have included some resources at the end of this leaflet which may guide you regarding the key privacy issues to consider.

Under data protection regulations you have the right to delete data that you have uploaded to a website/app. However, that might, in practice, be difficult to achieve. You will need to double check the provider’s terms and conditions and/or their Privacy Policy to find out how to request deletion.

It is important to remember that people who have ‘matched’ with you may have taken a screenshot or otherwise recorded the information about the match. Therefore, there are limitations to deleting the DNA once it has been uploaded and the ‘matching’ function of the DNA site enabled.

Most DNA testing providers offer an option to turn off the ‘relative matching’ feature. It is also possible that the DNA testing provider has shared your data with a third party/parties. You will be able to find out about this in their Privacy Policy.

Your choice of DNA test will depend on the questions you are hoping to answer. For further information and an in-depth analysis of the available options, see ‘The Best Tried and Tested DNA Tests 2024’, by Debbie Kennett.

Further information is also available from the International Society of Genetic Genealogy.

The links to these resources can be found at the end of this page.

At the time of writing, all the companies, all the companies will provide you with a report on your ancestral origins. They compare your DNA to reference populations and assign percentages of your DNA to different world regions (e.g., 15% Ireland) and populations (e.g., 45% Ashkenazi Jewish).

Some of the companies will assign you to genetic groups (also known as genetic communities or ancestral journeys). These genetic groups are based on networks of people sharing large chunks of DNA and provide information about your more recent ancestry within the last 200 to 300 years. Some of the groups are very granular and will assign you to counties or sometimes even towns.

Each company has their own reference populations and proprietary algorithms so the results will vary from company to company. The results are also updated on a regular basis and so may change over time.

The companies will also provide you with a list of your relatives and a prediction of your likely genetic relationship, such as an uncle or half-sibling. The relationship predictions are based on the amount of DNA shared and the number of shared DNA segments. The more DNA shared the closer the relationship. The results are ranked starting with the closest relatives, and the list of DNA matches will include several thousand names.

Some matches provide information about themselves in their profile and sometimes even a photo. Most of the sites allow the user to attach a family tree to their DNA results which can help you to work out your relationships. Most companies have an in-house messaging platform that will allow you to contact your matches. Some companies allow people to provide e-mail addresses.

In some cases, you can be matched at the outset with a parent, a child or a full sibling. These close relationships can be predicted with high confidence. With other relationships there is a range of possibilities. For example, if two people share 25% of their DNA this could represent a half sibling relationship, a grandparent/ grandchild relationship or an aunt or uncle/niece or nephew relationship.

With some companies you need a subscription to access additional features. For example, at AncestryDNA a subscription is required to access the full family trees of your matches and to access the genealogical records to assist with your search.

There is an additional ProTools subscription which provides further functionality such as the ability to see how your matches are related to each other – more information on which can be found on Ancestry’s website.

Some of the companies will provide trait reports which predict physical features (hair colour and texture, eye colour, etc), response to nutrients, personality traits, etc.

23andMe offers health reports. There are a range of reports providing information on carrier status for conditions such as cystic fibrosis and reports indicating your propensity to develop particular diseases such as Alzheimer’s or breast cancer. These reports are predictive not diagnostic and should not be seen as a substitute for medical advice.

The companies have support pages which provide information to help you understand your results. Some of the companies provide educational webinars and videos.

There are also various online support networks in the form of Facebook groups and mailing lists where you can ask for help (see list of resources at the end of this leaflet).

Some people use third parties to help them with their search, though it is important to note that these services are not regulated. You may hear about people using a ‘genetic genealogist’ – this is someone who uses DNA evidence in combination with genealogical research in order to identify the donor.

There are both professional and volunteer genetic genealogy services available. You may also see those who offer voluntary services referring to themselves as ‘search angels’ or ‘DNA detectives’. Links to some useful Facebook groups can be found at the end of this page.

There are three organisations which advertise the services of professional UK-based genealogists:

• Association of Professional Genealogists (APG)
• Association of Genealogical Researchers in Archives (AGRA)
• Register of Qualified Genealogists (RQG)

These organisations all have their own codes of practice and provide a directory of their members. AGRA assesses the genealogical research skills of its members. RGQ membership is based on genealogical qualifications.

However, none of these organisations guarantee the genetic genealogy expertise of its members and therefore membership of these organisations does not ensure that the person will have the relevant skills to help with your search.

There are also some members who advertise their expertise in DNA testing but may not have adequate knowledge or experience to provide good advice or a cost-effective service. You may want to seek advice from friends for word-of-mouth recommendations.

Learning that you are donor conceived via an online DNA test can be a huge shock. Receiving information unexpectedly often raises lots of questions, although for some people it also can confirm any feelings you may have had of being different to the rest of your family.

Whether or not you choose to tell anyone close to you about the fact you are donor conceived, you might also find it useful to talk to others with similar experiences.

Donor Conceived UK (DCUK) is a charity bringing together a supportive community whose members have a wide range of experiences of being donor conceived. Through the DCUK community you can connect with other people who are either in a similar position, or who have been through what you are experiencing.

They can understand and relate to you and your experience in a safe environment. They also curate a list of therapists who have experience in this area. DCUK welcomes donor conceived people aged over 18, who have been conceived in the UK. You can find more information about DCUK and contact details on their website, a link to which can be found at the end of this leaflet.

The Donor Conception Network (DCN) is the UK’s first and largest charity dedicated to supporting donor conception families and prospective families. The DCN offers information, resources and links relevant to donor conceived people, and can offer you information or connect you with others in the same situation. You can find more information about the DCN and contact details on their website, a link to which can be found at the end of this leaflet.

The Human Fertilisation and Embryology Authority (HFEA) is the UK’s fertility regulator. Since 1991, the HFEA has held a database of information about every fertility treatment carried out in the UK, called the Register. Donor conceived people and their parents can apply to the HFEA for information held about their donor and genetic siblings on the Register. They have also created web-based resources which might be helpful for you, the link to which can be found in the ‘resources’ section at the end of this page.

If you would like to speak to a professional counsellor, there are currently not many counsellors who will have specific experience of talking about your situation. General counsellors are available through the British Association for Counselling and Psychotherapy and UK Council for Psychotherapy counselling directories or your own GP. For all but the latter you will need to pay for the service.

If you are finding it challenging to come to terms with what you have discovered, it can be hard to know how to talk about donor conception. It can be especially difficult when your family members have kept the circumstances of your conception secret, sometimes for decades.

While this might be difficult to understand, there are many reasons why your parent(s) might have kept the circumstances of your conception a secret – reasons which are often complex and personal.

These could include:

• A sense of shame or embarrassment about having to turn to a donor to have a child,
• A worry that telling you that you were donor conceived might damage their relationship with you,
• A fear that they may be rejected because one or both of them are not your genetic parent,
• Wanting to protect you from feeling different, or from distress if you want information about the donor that you can’t find,
• Having been told not to tell you at the time of treatment. This was common practice in the 1980s and 1990s and beyond,
• Not knowing what to say, and
• Putting it off because the right moment has not come.

Some donor conceived people think that it is better to be open and truthful, as secrets can be burdensome for everyone. However, it is not uncommon to feel worried or anxious about how to start a conversation in these circumstances.

You might want to spare your parent(s) from feelings of sadness, or embarrassment.

You might also wonder who does, and does not, know – and whether your siblings are also donor conceived. You might feel that it isn’t your secret to tell and worry that disclosing what you know will disrupt and damage family relationships.

All of these feelings and concerns are understandable and legitimate. However, ultimately you need to do what feels right for you. You are not alone, and there are groups, mentioned above, who can help you to make sense of your situation and work out what the right approach for you is.