Joining the register and implications of the donor linking process
To join the Register, please contact us and we will ask you to complete a registration form. If you are a donor conceived person, please ensure you include your date of birth. If you are a donor, please provide the year(s) of donation.
Once we have received your completed form and copy of ID, we will process your application. You will then be able to access our DNA Testing services and, where applicable, our Counselling services. Counselling is available if you were conceived or donated prior to August 1991.
You may choose to access our services as and when you require them, at your own time and pace.
At the Donor Conceived Register, we are able to offer you support from our team of specialised counsellors.
We strongly encourage you to take advantage of our confidential counselling service. The first two sessions are free, with any additional sessions charged at £25. This service provides you the opportunity to talk things through in a way, and at a time, to suit you.
Counselling is available to prior August 1991 DCR registrants and their immediate family, at any time, whether joining the DNA database or not.
Sessions can be completed by telephone or online and are available once your registration is completed and DCR reference number ID is provided.
If you wish to learn more about the service, please contact the counselling team to discuss your options. Patricia Lambert, DCR Counselling Lead, telephone: 0151 702 4339 or email: donorconceivedregister@lwh.nhs.uk.
If you decide to go ahead with DNA testing in the hope of making contact with a donor, offspring or donor conceived half-sibling, you’re likely to go through many different emotions: anxiety, curiosity and excitement may all play a part.
Your feelings may change and perhaps become more intense after you have received the outcome of your DNA testing and it is important to bear in mind the implications of not finding, as well as finding, a link.
Again, we strongly encourage you to take advantage of our confidential counselling service (two sessions are free and costed at £25 thereafter) which gives you the chance to talk things through in a way, and at a time, to suit you. This service is available at any time during your process.
You may wish to discuss what it is you wish to achieve from the process and whether it is a good time for you to start the process. It is helpful to discuss the implications for yourself and those close to you.
You can choose where to have your DNA sample taken such as at KCL laboratory, your General Practitioner Surgery, through a Sampling Visit, or selected pharmacies in London partnered with the testing service. Note that KCL can also send sampling kits overseas. You will receive detailed information about Sampling Options once you are registered, or upon request.
The KCL DNA Analysis Team are experts in the field of genetics and provide an accredited service at the subsidised cost of £95. They, alongside us, will keep in touch with you regarding the process from start to finish.
Commercial DNA testing companies, such as Ancestry or genealogy linking sites, require you to provide a sample for analysis so that your profile can then be uploaded to a database and matched with others. If you are contacting us to verify results you have received from a commercial company, please be aware that results may be different. If you would like more
False positives and false negatives
Half-siblings share only 25% of their DNA, on average, and there is a significant range around that average. This means that linking half-sibling to half-sibling will always have a degree of uncertainly. It is important to understand that where links have been disclosed, the possibility remains that results may in fact be a false positive, and that two registrants declared as linked together are not in fact related.
There is also a risk that the opposite may apply, that registrants who are related to each other are not identified i.e. false negative. King's College has used a number of strategies to reduce this risk, using a variety DNA linking techniques, supported by validation using biographical information e.g. age range, location of conception etc. However, the following disclaimer applies:
Registrants should be aware that where a ‘link’ is disclosed, this is a statement based on statistical likelihood, and we cannot provide a 100% guarantee that a half-sibling relationship exists. By disclosing links at a likelihood ratio threshold of 50, there remains a risk that a small number of false positives will be declared. King's has sought to reduce the false positive rate as much as possible but cannot eliminate these completely and all individuals who are disclosed as having a link should be aware of this possibility.
| Likelihood ratio | Strength of evidence | Results disclosed |
|
Less than or between 1 - 10 |
Negligible evidence | No |
| 10 – 50 | Very Weak evidence | No - additional DNA evidence required, in particular maternal DNA samples |
| 50 - 100 | Weak evidence | No – additional supporting evidence will be sought e.g. ‘X’ or ‘Y’ chromosome testing, age of potential half-siblings within 5 years, conceived in same geographic region clinic. |
| 100-1000 | Moderately strong evidence | Yes |
| 1,000 – 10,000 | Strong evidence | Yes |
| 10,000 – 1,000,000 | Very strong evidence | Yes |
| Greater than 1 million | Extremely strong evidence | Yes |
Should a match not be found on the Donor Conceived Register at this time you may feel disappointed and despondent. Here at the Donor Conceived Register we offer counselling support for everyone accessing the service and you can get in touch to discuss this with us further. If a link has not been found at this time, it may be in the future as more people register with our service. If you would like us to keep in touch with you and let you know of any potential links, please keep us up to date with your contact details and consent and we will be in touch should this occur.
If your results determine that there is potential link with another individual on the register both sides of the link will be informed of this and it is important to consider the implications of finding a match.
If you are a donor it is beneficial to consider the following:
- The number of Donor Conceived offspring you may have a link with
- How your own genetic children, if you have any, may feel about you being a donor
- The possibility of half sibling links
- The potential of meeting links
- Do your partner/children know you donated and how would it impact upon them?
- The possibility that the donor conceived individual may not want similar level of contact.
If you are donor conceived it is beneficial to consider the following:
- The potential of meeting links
- The possibility and implication of a number of half siblings
- The possibility that if you have siblings, they may not have same donor and whether these siblings are aware they are donor conceived
- The potential that half siblings or donors may not want similar level of contact.
A report will be provided directly from DNA Analysis at KCL that describes the nature and the likelihood of the match. Please note that a report with named links will be shared upon request if all parties agree to share identifiable information.
All parties will be independently and simultaneously invited to state how they would like to proceed. There are a number of options available to you and we would encourage you to only do what you are comfortable with, and in your own time. ·
- No action – as stated above, only do what you are comfortable with, and in your own time
- Exchange of biographical information – each party provides a short non-identifying biography of themselves which is forwarded onto the other party by the DCR
- Anonymous post box – the DCR acts as an intermediary, providing an anonymous mailbox, allowing all parties to communicate with each other without disclosing identifying information
- Independent contact – all parties agree to exchange of identifying information and contact information, and manage contact themselves, at their own discretion.
A member of the DCR team will then engage with all sides to help manage the contact, based on the preferences expressed by them.
The key principle followed will be that neither party will be expected to go beyond the level of contact they are comfortable with. Typically, there will be sequential progression through the contact process, over a period of many months, with either party free at any time to withdraw from the process or further contact.
You may join the DCR DNA database once your registration is completed. The DCR will facilitate and coordinate DNA testing with King’s College London by following the steps outlined below:
- Registrant to inform DNA sampling preference. For example: GP, sampling visit, or attendance at KCL site. All options will be provided once you express interest in joining the DNA database.
- Registrant to provide payment for DNA Analysis Bank details to be supplied by the DCR administrator.
- DCR administrator to submit a DNA analysis request to KCL. Further information regarding your sampling appointment will then be provided.
- Registrant to arrange the DNA sampling appointment. This will be arranged directly with the chosen sampler provider. If sampling is not completed at KCL, KCL will dispatch a sampling kit.
- DNA Repot is issued the registrant will receive their DNA report approximately four to six weeks after DNA sample arrives at the King’s College London laboratory.
The timeframe above may be extended if additional testing is required. This may occur due to DNA mutations, the need to avoid false positive matches, or poor-quality sample.
We strongly recommend adding your mother’s DNA where possible if you are a donor conceived. This helps strengthen potential links, reduce the likelihood of false positive matches, and minimise the need for further testing.
KCL genetic testing does not provide medical or heritage. The testing focuses solely relationship and identification markers.
Commercial DNA testing companies (such as AncestryDNA or 23andMe) require samples to be uploaded to their own databases for matching. If you are contacting us to verify results obtained from a commercial provider, please be aware that King’s cannot accept DNA profiles from other organisations. Results obtained through KCL may differ, as slightly different genetic markers are analysed.
If you would like further clarification, please contact us.
The DCR DNA database is a small database compared to genetic testing companies available worldwide. Although, we follow strict NHS polices and guidelines and keep all registrants’ information and DNA related data safe. We do not share information with any third-party organisations, including NHS services.
Additionally, everyone included in the DCR DNA database has made a conscious decision to be part of the database, which puts everyone at easy in case a match is found.
Also, you can count with the support from our dedicated admin team and specialised counsellors who will guide through every step you take when embarking on this journey.