| We have listed below a number of Frequently Asked Questions received by UK Donor Link. To read the answers to any of the questions simply click on the relevant question of interest and you will be taken to the detailed answer. To return to the questions, click Top. |
1 - Why was UK DonorLink set up?
2 - Why does UK DonorLink use DNA testing?
3 - Is DNA testing always conclusive?
4 - Are any other DNA tests available?
5 - Why isn't UK DonorLink able to find out from clinic records or from the year of treatment/doctor whether there are links between registrants?
6 - Which clinics were most widely used in the past prior to 1991?
7 - What is the difference between the UK DonorLink Register and the HFEA Register ?
8 - What is the difference between identifying and non-identifying information?
9 - If I decide to consent to identifying information being given, can I change my mind at a later date?
10 - I have registered with UK DonorLink but no longer wish to participate. Can I withdraw my name from the register?
11 - I was a sperm donor for some years prior to 1991. I was told that I would never be identified. Is this still the case?
12 -I donated in 1988 for some months and then again in 1992 for several more months but at different clinics. What is my position?
13 - What help and advice is available to those who register with UK DonorLink?
14 - I am a donor who donated in the UK but now live abroad permanently. Am I able to go on the register?
15 - I am a donor conceived adult but now live abroad permanently. Am I able to go on the register?
16 - I live abroad, but was a donor in the UK . Can I access counselling where I now live?
17 - I am a donor conceived adult but live abroad permanently and only rarely visit the UK . Can I access counselling where I now live?
18 - I was a donor who donated abroad prior to 1991. Can UK DonorLink help me?
19 - I am a donor conceived adult whose mother was treated abroad. Can UK DonorLink help me?
20 - I am a donor conceived adult. What are the chances of a link being made between myself and either my donor or a half sibling who shares the same donor?
21 - Is it more likely that a link will be made between a donor and donor-conceived adult or between genetically related siblings who share the same donor?
22 - Egg and embryo donation is a more recent feature of fertility treatment. How likely is it that a link will be made in relation to an egg and/ or embryo donation and a donor conceived adult?
23 - I am the parent of a donor-conceived teenager born after 1991. I have not told my child of his origins. Do you have any advice?
24 - I work in a health setting and know many people at my G.P.surgery personally. Do I have to use my G.P. to witness my DNA test?
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1 - Why was UK DonorLink set up? - Top
UK DonorLink was launched with a Department of Health grant in 2003 to enable adults affected by donor conception through treatments prior to August 1991 to voluntarily place their names on a register that might lead to them being able to exchange information and have contact with any other registrants to whom they are genetically related.
UK DonorLink was set up in response to a public consultation held by the Department of Health. Today we know that many people directly affected by donor conception would like to find out more about those to whom they may be genetically related through donation. Prior to the Human Fertilisation and Embryology Act 1990, donor conception treatments were not regulated by law. Donors were usually anonymous and there was no legal requirement to maintain records. It was very difficult for those involved to establish their genetic connections or get information about those to whom they may be genetically related.
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2 - Why does UK DonorLink use DNA testing? - Top
DNA testing is used because there is insufficient or little information available from clinics or other records to make links between those who may be genetically related.
Prior to the Human Fertilisation and Embryology Act 1990, fertility clinics were not regulated by law. Donations were usually anonymous and in some cases records were not kept or were lost when a clinic closed. There were a mix of private, NHS and charitable clinics involved in fertility treatment. Sperm donations started to be routinely frozen from the early 1980's onwards rather than only being used �fresh�. Some donations were transported to other parts of the country to be used in treatments away from where the donation was made. It is not known how many donors or patients used each clinic. Some donors donated at several clinics at the same or different times. For those who donated or were conceived prior to 1980, information such as the name of a clinic, doctor and year of conception can provide useful background information when starting the process of tracing.
For all of these reasons it is not possible to link genetically related people using only the details of clinics, dates or doctors' names. UK DonorLink therefore has to use DNA testing to identify potential genetic links between donors, donor conceived offspring and their genetically related siblings.
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3 - Is DNA testing always conclusive? - Top
DNA testing can never be 100% conclusive even though popular coverage in the press gives this impression. Whilst identifying a genetic relationship between a donor conceived offspring and their donor is more straightforward in scientific terms, identifying such a relationship between genetically related half siblings is scientifically more challenging and more dependent on a variety of factors. For this reason, UK DonorLink can never guarantee that a genetic relationship identified through DNA testing is 100% conclusive. Advice and information given to registrants is based on the analysis of individual DNA by the laboratory. (Please refer to the DNA information leaflet).
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4 - Are any other DNA tests available? - Top
The biological parent of a donor-conceived adult is also invited (if possible) to have a DNA test. There is no charge for this service. DNA is used to eliminate any maternal/paternal DNA from the overall sample and thus simplifies the scientific process of linking with either a donor or genetically related sibling.
UK DonorLink also offers Y chromosome testing for males. For further information on Y chromosome testing please look at the registration section of the UKDL website, www.ukdonorlink.org.uk |
5 - Why isn't UK DonorLink able to find out from clinic records or from the year of treatment/doctor whether there are links between registrants? - Top
UK DonorLink does not have access to confidential information held by clinics about donors or patients. Neither does UK DonorLink have access to information about the numbers of donors or patients who used any particular clinic in a given year. This information was not routinely collected until after the HFEA Act was implemented in 1991. Clinics usually consider information held in relation to donor conception prior to 1991 to be confidential.
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6 - Which clinics were most widely used in the past prior to 1991? - Top
The majority of donors and donor conceived adults who register with UK DonorLink were associated with NHS, British Pregnancy Advisory Service or private clinics, especially situated around the Harley Street area of London . Regional centres also used were in such localities as Bournemouth, Sheffield, Glasgow , Dundee, Exeter ,Liverpool, Cardiff , Brighton, Swansea and other major centres of population.
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7 - What is the difference between the UK DonorLink Register and the HFEA Register ? - Top
UK DonorLink is a voluntary register providing an opportunity for donor conceived adults, their genetically related siblings and donors to exchange either identifying or non-identifying information with each other. It is intended for those who donated or who were conceived prior to the enactment of the Human Fertilisation and Embryology Act in August 1991. It differs to the HFEA Register in that it is entirely voluntary and thus only involves those who wish to register their details with UKDL.
The HFEA Register records treatments and outcomes resulting from assisted reproduction treatments that have taken place in licensed clinics since August 1991. The HFEA Register will be able to provide non-identifying information about donors to those who were conceived between August 1991 and April 2005, and identifying information for those conceived after the 1 st May 2006. Information will be made available to donor-conceived adults from the age of 18 years (or 16 years in special circumstances). Those who donated between August 1991 and April 2005 can re-register their consent to become identifiable by notifying the clinic where they donated (or the HFEA). Donor conceived adults who may be affected by the HFEA Act should contact the HFEA at www.hfea.gov.uk for more details.
The UKDL Register is intended for those who donated or were conceived, prior to August 1991 and who with to exchange either identifying or non-identifying information with those with whom they may be genetically related. Those who do not wish for any information to be revealed in relation to them being a donor or donor conceived adult should not register with UKDL. |
8 - What is the difference between identifying and non-identifying information? - Top
Identifying information is that which could lead to or has the potential to identify a person. Examples could be a full name or surname, address, date of birth or occupation, if unusual. UKDL will only release information when the person about whom the information relates has been offered the opportunity to discuss the implications of releasing such information with a UKDL member of staff and their written consent obtained.
Non-identifying information provides details about a person but does not identify him or her. This may include a forename, physical description, family background and medical history, personal interests and general work history if not specific. UKDL will only release information when the person about whom the information relates has been offered the opportunity to discuss the implications of releasing such information with a UKDL member of staff and their written consent obtained.
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9 - If I decide to consent to identifying information being given, can I change my mind at a later date? - Top
Yes, registrants may alter their wishes in relation to either be identifiable or non-identifiable by writing to UKDL.
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10 - I have registered with UK DonorLink but no longer wish to participate. Can I withdraw my name from the register? - Top
Yes, registration with UK DonorLink may be withdrawn by writing to us at any time.
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11 - I was a sperm donor for some years prior to 1991. I was told that I would never be identified. Is this still the case? - Top
Yes, unless you wish to register with UK DonorLink and provide identifiable or non-identifiable information via the UKDL Register
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12 - I donated in 1988 for some months and then again in 1992 for several more months but at different clinics. What is my position? - Top
Donations made prior to August 1991 remain confidential unless the donor wishes to voluntarily register their details with UKDL. The donation made in 1992 comes within the remit of the 1990 HFEA Act. The clinic where you donated will have collected information at the time of donation from which non-identifying information may be given to any donor offspring if they apply for this information at the age of 18 (and in special circumstances at the age of 16 years). A donor who donated post August 1991 and before the 1 st May 2005 may re-register to make their information identifiable but may not remove the non-identifying information available to their donor offspring at the age of 18 (or 16 in special circumstances).
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13 - What help and advice is available to those who register with UK DonorLink? - Top
UK DonorLink encourages all those thinking of placing their name on the register to talk through the implications with us. We can either arrange to see you at the UK DonorLink office in Leeds or put you in touch with a UK DonorLink approved sessional worker in your area. There is no charge for this service. All support and advice is confidential. UK DonorLink sessional workers have experience in issues relating to donor conception.
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14 - I am a donor who donated in the UK but now live abroad permanently. Am I able to go on the register? - Top
Yes. We are able to register donors who live abroad but donated in the UK . Special arrangements are made in relation to the documentary evidence required for registration with UK DonorLink.
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15 - I am a donor conceived adult but now live abroad permanently. Am I able to go on the register? - Top
Yes. We are able to register donor conceived adults who now live abroad but whose conception took place in the UK . Special arrangements are made in relation to the documentary evidence required for registration with UK DonorLink.
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16 - I live abroad, but was a donor in the UK . Can I access counselling where I now live? - Top
Wherever possible UK DonorLink will discuss any issues/questions by e-mail, letter or phone wherever you live according to your needs and wishes. If you live abroad UKDL will make every effort to access appropriate services on your behalf.
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17 - I am a donor conceived adult but live abroad permanently and only rarely visit the UK . Can I access counselling where I now live? - Top
Wherever possible, UK DonorLink will discuss any issues/questions by e-mail, letter or phone wherever you live according to your needs and wishes. If living abroad, UKDL will make every effort to access appropriate services on your behalf.
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18 - I was a donor who donated abroad prior to 1991. Can UK DonorLink help me? - Top
UK DonorLink can only help those who donated or were the recipients of donation in the United Kingdom ( England , Wales , Scotland , Northern Ireland or UK military hospitals overseas) pre August 1991. Some countries such as New Zealand and Australia also have donor registries. An enquiry would need to be made in the country where the donation was made to see if a similar registry exists.
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19 - I am a donor conceived adult whose mother was treated abroad. Can UK DonorLink help me? - Top
UK DonorLink can only help donor-conceived adults conceived through donor conception in the UK (and also in very limited circumstances in UK military hospitals overseas). An enquiry would need to be made with the fertility regulatory authority of the country to see what advice they could give.
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20 - I am a donor conceived adult. What are the chances of a link being made between myself and either my donor or a half sibling who shares the same donor? - Top
The only way of ensuring a possible link between those involved is to register with UK DonorLink. As more people register with us the more likely it is that a link will be made. However we cannot guarantee that any links will be made.
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21 - Is it more likely that a link will be made between a donor and donor-conceived adult or between genetically related siblings who share the same donor? - Top
It is far more likely that a link would be made between half siblings who share the same donor than between a donor and their donor-conceived offspring. This is because donors often donated many times. Statistically there will therefore be more offspring than donors, making a link between half siblings more likely than with a donor.
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22 - Egg and embryo donation is a more recent feature of fertility treatment. How likely is it that a link will be made in relation to an egg and/ or embryo donation and a donor conceived adult? - Top
Currently, UK DonorLink has few registrants who donated eggs or embryos pre-1991. Many children born to recipients of egg or embryo donation were conceived after 1991 and will therefore be covered by the HFEA Register. UK DonorLink is available to those born as a result of egg or embryo donation pre-1991 who wish to register.
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23 - I am the parent of a donor-conceived teenager born after 1991. I have not told my child of his origins. Do you have any advice? - Top
DC Network is a network of parents with children conceived with donated gametes. Its aims are to provide support to existing parents whether their offspring or children or adults, to the children themselves and to those contemplating or undergoing treatment. DC Network has a number of publications aimed to help parents tell their children of their genetic origins and to support children as they grow with the knowledge of their conception. See their website for more details of the organisation and for its useful range of materials � www.dcnetwork.org
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24 - I work in a health setting and know many people at my G.P.surgery personally. Do I have to use my G.P. to witness my DNA test? - Top
A UK DonorLink sessional worker can be appointed to witness your DNA test. The test has to be witnessed to ensure that the DNA is from the same person who completes the registration process. We regret that we cannot offer a UK DonorLink counsellor to witness a DNA test abroad.
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