Medical History
Knowing one’s medical history is an integral aspect of understanding one’s biological identity. Unfortunately, donor conceived people (DCP) born using anonymous donors have no access to half of their family medical history. Even those with identifying information about the donor have no control over the information shared. In a process initiated and carried out by medical professionals, access to one’s own medical history ought to be a fundamental right.
Importantly, having a clearer picture of genetic predispositions is vital for early detection, prevention and management of genetic conditions. Knowledge of one’s medical background can leverage DCP to make informed decisions about screening for genetic diseases, lifestyle changes, and reproductive choices. Without this important medical insight, individuals may find themselves with a genetic condition which could have been detected, and possibly treated, earlier through accurate, up-to-date medical records. This medical vulnerability can have a far reaching negative impact on a DCP and their children.
The Intergenerational Impact of Donor Conception
Unknown genetic conditions are not only a worry for the DCP, but also for their children and grandchildren: “I still wake up worrying that my son may be genetically compromised.”
Family Relationships
Family dynamics may change following a disclosure or discovery. Secrecy and stigma surrounding a DCP’s identity within their family may manifest into feelings of shame and guilt. DCP may, for example, find themselves the ‘gatekeeper’ to donor and half-sibling information, which lends itself to an emotional and ethical labour whereby DCP are expected to shoulder the burden of others’ feelings at the expense of their own valid emotions.
DCP have additionally reported being told to be ‘grateful’ to be born in response to an expression of complex feelings around one’s identity. The circumstances of a DCP’s conception are a result of others’ choices and an arguably flawed industry. Any resultant feelings by the DCP are valid and likely shared among others within the donor conceived community.
Those that discover their donor conceived status later in life (late discovery DCP) may experience the instinctive pain of kinship loss when realising one is in fact not biologically related to a member or members of their family.
On the flip side of the coin, DCP may also have to juggle the significance of meeting ‘new’ genetic relatives, and the ongoing challenges of maintaining (or not) these relationships.
Secrets and Lies
Many DCP feel the weight of secrecy and may be expected to ‘be’ the secret, whilst simultaneously keeping the secret. This perceived cloud of lies and deception can manifest as guilt and discomfort for the DCP and may take a toll on the individual’s mental health.
Alongside complex emotions, the journey of a DCP may at times be unnecessarily complicated by incorrect information:
- ‘The sperm donor was a medical student’ is a relatively standard claim for recipient parents to hear from medical professionals. While many sperm donors were in fact medical students, this is not always the case.
- DCP or recipient parents may additionally be told that a donor’s sperm was only used for the conception of DCP in 3 or 4 families, just to later discover that the true number of half siblings is disproportionately high, regardless of the year the DCP was conceived.
- While many DCP or recipient parents may be told that “the fertility clinic didn’t keep records”, many clinics have been found to keep records despite these claims. This may be the case even if one was conceived before August 1991, so if the fertility clinic still exists, it may be worth reaching out to see if they have any further information they can provide.
- Recipient parents were also reportedly frequently told that the donor looked like the raised parent. While this may sometimes be rooted in some level of truth, this has on many occasions proven to be false.
- DCP may also report being erroneously told that their biological parent or donor wished to remain anonymous when this was later shown not to be the case.
- Finally, in principle, UK sperm donations are restricted to a 10-family limit. Despite this advertised cap, this limit is not enforced outside the UK, meaning sperm may be exported and DCP may end up with donor conceived siblings from upwards of 75 families globally – a frightening statistic.
Real relationships are built on honesty and trust. You don’t keep secrets from people you love.
Trust Issues
Secrecy and lack of information about the donor can create feelings of mistrust, especially if the discovery of being donor-conceived is late in life, unexpected, or occurs during a time of family conflict.
Betrayl
Historically, DCP are often one of the last people to find out that they are Donor Conceived. Wider family, Godparents etc. often all knew and did nothing to help. This can mean that the DCP feels betrayed by multiple people and can feel humiliated that they were one of the last to know something so fundamental about who they are and where they come from.
Identity Crises
Discovering one is donor conceived late in life almost always shakes one’s sense of self, identity and belonging. Many late discovery DCP will experience some sort of identity crisis after they have found out, or were told, that they are donor conceived. This can have far-reaching ramifications on the DCP’s mental health and long term sense of self.
Many DCP feel like they don’t belong in their own lives anymore because of the identify confusion that can often occur. Not recognising our reflection, our personality attributes, our strengths and weaknesses and where they all come from.
DCP can also have feelings of being “less than”. We weren’t the child that our parents wanted. We were the final option after our parents tried many ways to conceive naturally. If a DCP’s parents had the choice to have their own fully biological child, that is what they would have chosen over having a DC child.
Grief and Loss
There is so much loss when you are donor conceived.
Loss of the person that we thought we were.
Loss and grief over the pain of not knowing our biological parent, biological grandparents, biological aunts and uncles, half siblings.
Loss and grief around not having access to our identity, history and any information whatsoever about half of our biological families.
For many DCP, the genetic connection to their Mum or Dad, the woman or man who raised them, whom they put in so much love, time and energy into, can feel like it has been stolen away when the DCP finds out they are donor conceived.
Isolation
It can be incredibly isolating and lonely being a DCP. Other people don’t have any understanding of the complexities of the experience of being DC, unless they are a DCP themselves. Lots of DCP who were conceived before 1991 were referred to as AID (Anonymous Insemination by Donor) rather than Donor Conceived and don’t know the correct terminology to use to start to find the correct support. Nearly all of the DCP that join Donor Conceived UK have never met another DCP.
Misconceptions
The media and the misinformed often make unsubstantiated assumptions about DCP, which can be both harmful and upsetting.
DCP often have to deal with offensive comments or language from people who don’t understand, making it even harder to open up about the complex, and sometimes contradictory, emotions involved. Donor conceived people may also be assumed to be searching for a parental figure or financial support when finding the donor used in their conception. Intentional or not, this often results in a belittling of the health anxieties of DCP and their understandable curiosities.
Such misconceptions may make it hard for DCP to talk to their friends and family about their experience.
Siblings
DCP are often confronted with uncertainty around the possibility of donor conceived siblings. While some DCP may only be aware of a small number of siblings, or none at all, others may be confronted with large (and possibly global) sibling groups. The implications of large sibling groups can be overwhelming, distressing and difficult to navigate. Of course, like many aspects of the donor conceived experience, there is no instruction manual on how to handle such news. DCP are therefore left to their own devices, weighing different outcomes, threading together thin strands of information, and grappling with unanswered questions.
Large sibling group or not, DCP often have an open-ended number of siblings, which may or may not ever be found.
DCP conceived after August 1991 can only access information about their siblings once they reach the age of eighteen, meaning there is no way to form sibling bonds whilst young. When non-UK-based donors are used, the donor or other siblings may not speak the same language, which may make productive contact challenging.
Additionally, while many sibling groups may cluster around a similar age range, gametes can be stored for up to 55 years. In principle, this can lead to donor conceived siblings with a 50-year age gap or a biological parent that is over 100 years old when the donor conceived child is born. Taken together, the lived experience of navigating surprising realisations, new relationships, and unanswered questions can take its toll on the DCP.
Upsetting Outcomes
While many DCP are fortunate enough to hear back from the donor upon reaching out, DCP may encounter rejection by the donor, donor’s family, or half siblings. While not uncommon, this is often a disappointing and challenging experience. Being told by the donor that “you are not my son and you never will be” is incredibly hurtful.
DCP may alternatively discover that the donor has passed away before they have an opportunity to make contact or are simply unable to track down the donor or half siblings at all.
These experiences may be particularly challenging where the DCP is aware of other DCP with a ‘more positive’ outcome, and it is important to remember that no two DCP share the same story.
Being a Science Experiment
A lot of DCP struggle with how they were created. DCP were not created in an act of love. DCP were created in an examination room, a lab or with the use of the “turkey baster” method. It is very likely that our biological parents have never been in the same room together and have never met. This knowledge can take it’s toll on a DCP.
HFEA Waiting Times
DCP conceived after August 1991 who choose to make the often emotionally significant step of requesting information about the donor used or any donor conceived siblings are frequently confronted by very long waiting lists and, on occasion, administrative errors. Amongst the emotional turmoil DCP frequently experience, long HFEA waiting lists are a frustrating and distressing hurdle to encounter.
Serial Donors and Consanguinity
Some DCP (particularly those conceived via sperm donor) may experience the anxiety of having been born via a serial donor. Serial donors, such as the man illustrated in the Netflix show ‘The Man with 1,000 Kids’ have dark and upsetting intentions. The impact of having so many biologically related individuals can not only be disconcerting, but also dangerous. Should a serial donor donate repeatedly within a particular community or geographical location, the risk of unknown sibling interaction and inadvertent consanguinity rises. One DCP stated, “I still wake up worrying that I may’ve slept with my brother.”
If you are a DCP conceived after August 1991, you can apply to a government regulator to find out whether you are related to a new beau. “If you’re over sixteen and are thinking about starting a physical relationship with someone, you can make a joint application to us to find out if you’re genetically related.” For more information, please see: Finding out about your donor and genetic siblings.
Fertility Fraud
In certain instances, sibling groups have traced their paternity back to the fertility doctor themselves. One such case, as shown in the Netflix show ‘Our Father’, was Dr Donald Cline in Indianapolis, USA. Cline, who impregnated mothers seeking donor insemination with his own sperm, has since been revealed to have secretly fathered 94 children. Fraudulent substitution of donor sperm with sperm from an alternate source (one’s own, another donor’s or another patient’s) by a healthcare provider without the parents’ knowledge or consent is known as Fertility Fraud or Insemination Fraud and is an egregious violation of bodily integrity by a medical professional.
“Sperm Heist“
In rare instances, sperm has been stolen and used without permission or consent to create DCP. As above, this can deeply impact the perceived identity of donor conceived people involved.
Expenses
DCP are often faced with months, if not years, of speaking with a variety of professional help to get them through difficult period(s) in their journey. Whilst there are some free resources such as the two counselling sessions with the Donor Conceived Register for those conceived before August 1991, DCP are often left covering the financial burden of working with counsellors, intermediaries and genealogists.
Three different Cohorts of DCP
There are three different cohorts of DCP which depend on the date that the DCP was conceived:
- Donor Conceived Register (DCR)’ cohort – conceived before 1st August 1991
- Open the Register (OTR)’ cohort – conceived between 1st August 1991- 31st March 2005
- ‘Open ID’ (OID) cohort – conceived after 31st March 2005
Having three different cohorts creates unnecessary complexity, especially when different cohorts have different legal rights and different services available to them.
The Flipside of Direct-to-consumer DNA Testing
DCP are often compelled to put their DNA in the hands of private companies in order to find answers about where they come from and who they are. Many DCP report being unhappy about having to “give away” their genetic material to companies who could in principle share their data with third parties, after which DCP may lose control over the security of their data. You can hear more about potential issues of using at home DNA tests on the BBC Radio 4 programme The Gift Series 1 Bonus Episode: Hacked (also available on Spotify and other podcast services).
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