Hereditary conditions unknown: How the NHS is failing adoptees

I have lost count of the number of times I’ve had to tell healthcare professionals that I simply have little or no idea about genetic healthcare risks that I might carry. Like other adopted people, I have a huge gap in my knowledge as I was removed from my birth parents when I was a tiny baby and my adoption documents carry very little information. 

My documents, such as they are, appear to be more concerned with risk that I—a three month old baby—could cause to my new family, rather than any risks that I might have myself, relinquished without any real sense of my history. The other key area of concern is whether I, as a baby with an Iranian heritage, would prove too brown for an English family; one adoption officer writes, reassuringly, “one could not call her coloured if one did not know.” Fifty-odd years later, as I find myself in what is sometimes brutally called ‘sniper’s alley’ of heart attacks, stroke and cancer starting to affect my generation of friends and family members, I wonder why this I don't know more about my own risks—and what can be done to affect what has been called the adoption healthcare gap. 

There are surprising few official figures that can put a number to how many adopted people there are in the UK—and the subset of those adopted by people to whom they were not related, which is known as kinship care. The Parliamentary Joint Committee on Human Rights estimated in a recent report that between 1949-1976 around 185,000 babies were adopted from unmarried mothers—many forcibly—in England and Wales. There will obviously be more than that since, and this figure does not include N Ireland and Scotland. 

Another research paper suggests that around 13k babies were adopted every year in the 1950s with adoption reaching a peak in 1968, when nearly 25k babies were adopted. Those figures suggest that there are tens if not hundreds of thousands of adopted people, many of whom have gone on to have families of their own. Yet we do that at our own risk, not knowing what we are passing on to the next generation which for many of us are the first people we ever encounter who are genetically related to us.  

Talking this over with other adult adoptees, the same themes come up time and again. Everyone talks about the pause in conversation with medical professionals when they hear those words, “I’m adopted. I don’t have a family history”. The responses, however, vary—from the fascinated questions into a personal and sometimes painful history, to the embarrassed silence, and all too often the disinterested shrug, the moving on. The latter means that all too often, the adult adoptee is marked down as ‘no medical history of concern’ regarding, for example, menopause; cancer; heart disease and so on. 

But it’s the opposite. We simply don’t know what risks we carry, encoded into our DNA. We don’t know what risks we may pass down to our children. And the UK healthcare system has no way of tracking the adoptee population and finding out if our health is the same, or better, or worse, than the general population. As the interest in preventive healthcare and prediction-based care increases in the UK and elsewhere, adopted people are being left behind. 

Claire Alexander is Professor of Sociology at The University of Manchester. She has researched and published on race, ethnicity, youth and migration in the UK for over thirty years and was also adopted transracially as a baby. She says, “It happens every time you go to the doctors, especially as you get older. Medical professionals look at me, and this is where race comes in, and want to check me for conditions related to being South Asian but some of those are around lifestyle. But I was raised here, in a white and blonde English family.”

She adds, “I met my birth mother, and she later died of blood cancer. I went to the doctor with some issues and said I was concerned, because my birth mother had died of this rare cancer. I couldn’t get them to take my concerns seriously. Like it didn’t count. It won’t have anything to do with that.” 

Talking with other women who were adopted, who are members of the Adult Adoptee Movement (AAM), one recalled that she had gone through an early menopause. “I was 34 when I had my first child and I wish I had known that my birth mother had also had an early menopause. If I had known that, it would have made a  difference to when I decided to have children. To me, that was quite significant.”

Healthcare gaps can also be potentially life-threatening. The same woman said, “My son was diagnosed with a brain tumour when he was a child. I only very recently found out that there are childhood cancers in my birth father’s side of the family.”

“I spent much of my life unaware of what I am carrying in my genes and eventually passing on through my own children…there is a high risk of thalassemia within my ethnic community.”

Even if you reunite with your birth family, as I and others have done, the onus is on you to broach healthcare history with them. This is personal to them—and you are, as a virtual stranger, asking for the most private of information. I wanted to know if the migraines I have suffered from since puberty were genetic, but neither of my birth parents proffered that information. When I was later diagnosed with osteoarthritis and now face joint replacement, I realised that if I had known this genetic vulnerability I would have made different decisions about hormone replacement therapy. I haven’t asked my birth parents: one is in Iran and has little access to healthcare; my birth mother cut off contact abruptly so I have no way of asking her anyway. Other adoptees faced the same problem—but some ended up diagnosing their birth parents. 

Liz Harvie, who was adopted in 1974, is in reunion with both her birth parents. She explains, “I made a two-page word document of every possible medical condition I could think of and sent it to them… They were very patient and filled it out. But I have actually got Ehlers Danlos Syndrome and then diagnosed my birth mother with it, back up the chain. And now it’s benefitting her.”

Another adoptee found out that her birth mother’s family had a history of breast cancer, with another relation dying of a form of brain cancer—which she had no knowledge about until she reunited with her. It is now “down to me to pass any information onto the NHS so my own risk can be assessed,” she tells The Lead. 

Another discovered when she contacted her birth mother that the female side of her family is immune to local anaesthetic. “This explained why when I had six teeth out as a teenager, under local anaesthetic, I had to be held down as I could feel the pain. I was treated as having had a hysterical reaction. I didn’t find out that I was immune until I was 54.”

For adoptees who are adopted from other countries, or transracially, there can often be additional complications. I spent more than 20 years searching for my Iranian birth father and count myself lucky to have found him and for him to have reassured me that there was no family history that he knew of relating to cancer or dementia. Other friends with Iranian birth family have faced an upsetting and uphill struggle for information. Oftentimes we don’t look like other family members and this can cause upset at difficult times in healthcare settings.  

Claire Alexander recalls visiting her father in hospital as he lay dying. “I would go in and visit him and every time the nurse or doctor would ask who I was, and he would explain that I was his daughter. You know, you want to go and see your dying father and the medical professional is questioning your right to be there. This is where the race thing comes in, when you don’t fit in with your adoptive family.” 

Debbie Nahid, who co-founded the AAM, agrees. She is an intercountry adoptee, although she was adopted in the UK, and tells The Lead that she has spent “much of my life unaware of what I am carrying in my genes and eventually passing on through my own children…there is a high risk of thalassemia within my ethnic community.” She reunited with her birth mother and found her before she died of complications relating to diabetes—of which there is also a high incidence in her community. But Debbie has not been able to find her birth father. “I am now able to tell doctors that there is diabetes on my mother’s side, but is there another side of me that I know nothing about? As adoptees age we are acutely aware that access to our biological families’ medical history is not only vitally important for our peace of mind but life saving too.” Another adoptee, Vicki Fielder, says that there are a number of medical conditions prevalent in communities of colour, yet “they often get missed when the child is adopted into a white family and as with everything, early diagnosis is key to recovery.”

"Adoptees shouldn’t have to do the emotional labour of answering that medical question, “what is your family history”, time and again, without anything tangible as a result."

There are no clinical guidelines for treating adult adopted people; no training in medical schools about the particular healthcare needs of adopted people. The National Institute for Clinical Excellence (NICE) has limited guidelines, with one on attachment and another on healthcare for ‘looked-after children and young people’. It has three mentions of adoption in it and no reference to the specific healthcare needs of adult adoptees with no knowledge of their biological family history. All too often, the focus on health outcomes for adult adoptees has been on attachment and mental health. This leaves a glaring gap around physical health and, in particular, inheritable conditions and the focus on contemporary adoption effectively leaves adult adoptees without a care pathway in the health system. 

Research Fellow Dr Michael Lambert, at Lancaster University’s Medical School, told The Lead that as there were no General Medical Council requirements to teach adoption healthcare at medical schools he suspected that at the most it might be “raised during specific problem-based learning activities” or through “clinical exposure” rather than being a core component of training. He adds that there has been “no recognition” of the  medical consequences of adoption, saying: “By surfacing, recognising and attaching the very particular health needs of adoptees to both medical education and the NHS, it would give legitimacy and value to the lived experiences of so many and their largely overlooked requirements within the health system.” He says that continuous professional development could help medical staff in the system to understand “the very particular healthcare needs of adopted people, whilst NICE guidelines allow an opportunity for these to be mapped across the very complex fabric of NHS activities. This would need considerable input from those with lived experience to have meaning and resonance.”

The Department for Health and Social Care told The Lead that “the issue didn’t sit with them” and they referred me to NICE and NHS England. NHS England confirmed that there is no national training and no guidelines, but that it is recognised that this is a gap and is looking at how adoptees can be best served whilst a solution is found.

Ellie Johnson, a health consultant working for the adoption charity, CoramBAAF, told The Lead that there was now a structured process for obtaining health information for children who are adopted that they can access and that a medical advisor should make “significant attempts” to get information on medical conditions, including those linked to genetic factors, but said it was not always possible if birth parents refused.

She added that the charity was campaigning to end the change in NHS number when a child was adopted, which might then help with birth information being shared. She confirmed that there was no specific training in medical schools and said that the charity would like “more role-specific training in adoption issues” and that the charity would like to see more opportunities for adopted people to have regular reviews with GPs. 

In the US, there is some limited training in medical schools with the US based Adoption Council saying that some schools, including the University of Massachusetts Medical School and the Medical College of Wisconsin, offer electives on the needs of adopted people. But the council also stressed that many adopted individuals only have partial or no access to information about “their biological family medical history”. They also urge professionals to consider the healthcare issues of adoptees contemplating having their own families, with little or no genetic history to help them weigh up potential health risks for their babies. They urge training for “adoption competent healthcare”.

So how could the system be made better? Claire Alexander suggests better training for GPs, so they don’t look so horrified when adoptees visit; genetic testing for key inheritable conditions for adoptees, and that birth families have to give medical histories when babies enter the care system. 

Put simply, adoptees shouldn’t have to do the emotional labour of answering that medical question, “what is your family history”, time and again, without anything tangible as a result and without an adoption-specific medical pathway for adoptees.

As another adoptee put it, “You’re virtually treated as if born to that family. And yet you’ve got this hole in your medical history”.  One other concrete step forward would be if there was a voluntary ‘tick box’ in NHS medical data for adoptees. This could mean that at least some of us could have healthcare tracked- which could then be analysed to see if our health is better or worse than the general population. As Liz Harvie puts it, “We are not blank slates. This is our health at stake, and could even be our lives. This is serious. This is the thing people don't realise it doesn't end with us. It affects our children. And it's that multi generational aspect of being an adoptee whether we're talking medical identity, genetics, it goes down; it does not stop at us.”