Page Actions

Information for donor-conceived people: getting ready to search

From ISOGG Wiki

We’ve used the terms ‘donor’, ‘donor-related siblings’ and ‘donor relatives’ here but realise that you may use different terms.

This article provides advice on some things to consider when you are getting ready to search for information about donors, donor-related siblings or other donor relatives.

Who is this information for?

The information provided here is written from a UK perspective for donor-conceived people who are thinking about searching for their donor, donor-related siblings or other donor relatives. It will consider some of the issues that may come up and may help answer some common questions.

If you are not yet an adult, we strongly recommend that you talk to your parents or a trusted adult before going any further.

I would like to begin a search so what do I need to consider?

The first thing you need to do is to check any legal rights to information that you may have. This will depend on when and where you were conceived.

Next, it can be helpful to think about and write down what has led you to consider searching at this time, and what expectations you have. This could depend on who you hope to find information about (i.e. the donor, donor-related siblings or others).

When you are thinking about embarking on a search, you may well experience a range of strong emotions over time or from one setting to another, such as anxiety, apprehension, curiosity and excitement. This is completely normal. Your emotions may also become more intense if you actually find someone related to you. Try and identify anything that makes you feel particularly anxious and find what support and help is available to you.

You may find you keep changing your mind about what to do, or go so far in the process and then take a break, maybe returning to it in the future. It may feel confusing at times to know which feelings are about being donor conceived, which are about having information withheld from you and which are about the possibility of finding donor relatives. This too is all understandable and perfectly normal.

You may find it useful to think whether you’d like to make contact with anyone that you find. Some people prefer to take one step at a time – and that’s fine – but if you’re someone that prefers to think well ahead, then take a look at our other page on Getting ready for contact

How much information am I likely to find out through a search?

This can depend on many factors such as when and where you were conceived but the quality and quantity of any information that you find can also vary a lot. For some people, it will be disappointing as they may not find any information at all or only a small amount such as the donor’s height and weight. Some people find out just enough to satisfy their curiosity and may not feel any need to do anything more. Others discover quite a lot, including information about the donor’s interests and personality. They may then carry on gathering more over time, especially if they go on to find donor-related siblings or other donor relatives. Unfortunately some people find that their donor, donor-related siblings or other donor relatives have died or become infirm or the information may contain distressing material such as the onset of a health condition that they themselves carry a risk of inheriting.

At the time that your donor donated, he or she might not have realised that you would be told (or would find out) that you were donor conceived and might not have understood the potential importance of providing good quality information about themselves. Professional advice might also have been very different then. Some treatment clinics have never collected such information, especially those operating in the UK before there was any legislation. The same is true even today for many overseas clinics. It is also highly unusual for clinics to collect information about donor-related siblings.

You might also be able to find information from sources other than medical records or Registers, such as the internet. This is dependent on whether you have any information at all with which to search. Some of the support groups and websites have clinic-related subgroups and their numbers are increasing all the time.

What if I discover the donor is someone known to me and/or known to my parent(s)?

Discovering your donor is someone who is (or was) known to your parent(s) and possibly to you too is a potential outcome, but this is fairly unusual. You may find out that they are or were a family member or friend, though not necessarily someone now in regular contact. Or your parents may have found the donor through an informal route such as an online matching/introduction service. The intention may have been for them to have either a limited or active role in your life, or no role at all. There could have been disagreements around this or your donor may not have wanted you to know about them for their own personal reasons.

It’s also possible that the donor turns out to be someone other than the person your parents understood them to be. For example, in the past some donors were friends and colleagues of the doctor in charge of the clinic or even the doctor himself but this was not always made clear to your parents.

You may need to take stock of the potential for finding out such information, allowing yourself time to think about how this might affect you and your relationship with all involved.

When is a good time in my life to seek out information?

This can depend on many factors. Where you are in your life at the moment may affect how well you can cope with the possible ups and downs of this process, especially if you have recently been through a major life event such as a relationship breakup, birth, or death or have only recently found out that you were donor conceived and that this information was withheld from you. It is important to consider what else is going on for you at this time or for those close to you, as well as your reasons for wanting information at this particular time.

Should I involve my family and friends at all?

Making the decision to search can raise strong emotions in those around you as well as in you yourself. You may feel that including your family in this process and being as open and honest as possible may help them and you feel more at ease (unless they specifically ask not to be kept informed). However this is not the case for everyone: you may be afraid of upsetting them or your relationships with them may be especially tense. Some of your family members may not understand your need to search and would prefer you not to go ahead. And you yourself may have some mixed feelings towards them, especially if you have only recently found out that you are donor conceived because they withheld this information from you. Will this make a difference to your decision? How will you handle it either way?

It can be helpful to talk to friends or others who you trust and who you know will support you in your quest to find out information about your genetic origins. The same is true for contact with other donor-conceived people. They may all help you identify the pros and cons as well as what your expectations, hopes and fears might be and the possible impact on you and also on your family, your donor, donor-related siblings and their families.

I have siblings and we have the same donor so should I share any information I discover?

If your siblings (or indeed you yourself) are not yet adult, then it is usually important to make sure that your parents are also aware of what’s happening. You can then discuss together how to handle the sharing of information.

If your siblings are all adults then when and how you tell them what you find will depend on your relationship with them. Be alert to the fact that whatever you find out could hold implications for them too. They themselves may have decided that they do not yet want any information, if at all, so they may have to adjust to the fact that your approach is different. Or they may never have thought about searching and are now prompted into having to decide whether or not to be told what you find out. It is also possible that you unexpectedly find that you do not share a donor after all as not all clinics in the past were honest with those they were treating. It’s not unusual for siblings to react differently in this complex situation.

On the whole, it’s better to be open about the fact that you want to search as most donor-conceived people, regardless of age, prefer being kept in the loop so that they can then decide how much they want to be kept informed.

I have siblings who don’t share the same donor. Should I tell them about my search?

As with the situation above where you have siblings who share the same donor, you should be sensitive to the impact that your searching might have on any siblings that were not conceived with the same donor or ones who are not donor-conceived. Here again, involving your parents in deciding how to tell them could be helpful, especially if they are not yet adults.

In my search for information is it helpful to use social media?

There are now many informal support groups on Facebook where donor-conceived individuals can share their experiences with their peers. Some groups are open to both parents, donor-conceived individuals and other interested parties, whereas others are restricted to donor-conceived individuals alone. There are groups with a UK focus and others with members from all over the world. Each group will have a different feel with the tone set by the moderators in charge of the group. Some groups are secret and accessible by invitation only. Other groups are closed, which means that anyone searching Facebook can find the group and join, though the posts in the group are restricted to members only. There are also some public groups where all posts can be seen by anyone on Facebook. Think carefully before sharing any information about your search or details about your conception on social media sites – once shared it’s out of your control. It’s also very important to respect the privacy and sensitivities of other family members.

The US National Genealogical Society provides some useful guidelines on sharing information with others.

What self-help and peer support groups are available?

The situation regarding self-help groups and forums is improving all the time. These are almost all online and might include donor-conceived people from all around the world. As well as contact with other donor-conceived people, they can provide links to resources such as podcasts, clinic groups, films about donor conception and academic papers. There is a face-to-face group in the UK: the Registrants Panel of the UK Donor Conceived Register meets from time to time and also has a closed Facebook page. Donor-conceived adults can also have free membership of the Donor Conception Network which offers occasional opportunities for contact and access to their helpline.

Although you all share an interest in finding information, you will not all share the same views about donor conception and, of course, you will have a range of experiences of growing up, becoming aware of your origins and of what being donor conceived means to you today.

What professional and other support is available?

Unfortunately there are very few professional support services available to help with searching or with coping with any feelings that might be triggered.

For those using the UK’s Donor Conceived Register (for anyone conceived prior to August 1991), some time-limited professional help is available free of charge. Time limited, free professional support through the Human Fertilisation and Embryology Authority (HFEA) is available for anyone conceived in a UK clinic after August 1991. This includes support while you are searching, help with making contact with anyone that you find (known as professional intermediary services) and therapeutic counselling. But for anyone else – including anyone conceived overseas or outside of a clinic – there are no dedicated services in the UK.

Some people might be able to get some free professional counselling through their general practitioner but these counsellors are unlikely to be very familiar with the impact of donor conception and/or searching for genetic relatives. There are also private, fee-charging counsellors but, again, not necessarily with knowledge of donor conception and/or searching for genetic relatives.

I feel I have considered all the potential gains and drawbacks of searching and want to get started so what do I do next?

If you locate your donor, donor-related sibling or other donor relative and want to make contact, then check out the page entitled Getting ready for contact.

Top tips

✓ Be as sure as you can that this the right time in your life for coping with the ups and downs that searching and receiving information or not will bring

✓ Remember that your search could go either way – finding donor relatives quickly or not at all – and that you can slow down the search at any time or stop altogether

✓ Have support in place, either trusted family or friends or an independent third party

✓ Consider those around you as they will be affected too

✓ Be alert to the impact on any siblings you were raised with and involve your parents if you or your siblings are not yet adult

✓ Remember that you may find many donor-related siblings, some who already know each other and some who start searching after you do

✓ Be prepared for the unexpected – if you find your donor relatives they may be very different to you and have very different expectations

✓ Look after yourself and don’t underestimate how physically as well as emotionally tiring this can be

See also