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can anyone of you get access to your childs DNA medical files?

(25 Posts)
BeckerLleytonNever Wed 05-Oct-16 16:41:17

As in their past medical lineage history?

Mine has severe mental health and physical probs.

Ive busted my butt getting various diagnosis for her, she has SOME but I need more. I know the birth family and know for a fact they have a history ofd mental heath and physocotic problems, including jail sentences for murder , violence etc.

Unforch mine as she gets older is displaying a lot of this phycotic behaviour, , I bring her up the best I can (Im a single parent),so I know its not my parenting, its her condition, but the adoption panel/SS/GP say I have no right to access her past family files because of THEIR rights.

Shes MY child now, doesn't that give ME the right to know all I can about her so I can get the best help for her?

Ive asked about legalities but it seems I hit brick walls all the time.

Its only my word about it and no one takes me seriously so need t6o have official evidence.

anyone else have this dilemma?

will look at replies tomorrow, have to log off to see to my childs medical needs. thanks. appreciate any advice.

Kr1stina Wed 05-Oct-16 18:16:51

Most people don't have their DNA tested on the NHS, so it won't be in any medical files. Even if you could get access to them .

Are you saying that you want medical information from her birth family ? Your GP is right, you don't have any access to that.

And even if you did, I'm not sure if would help you . You woudl have no idea if the diagnoses that any past generations had were correct . Or if they could be inherited or the likelihood of that . And how the risk of developing any condition is exacerbated by stressful life events.

If , for example, you discovered that both of her birth parents has a psychotic illness, that only proves that she is more likely than average to have one. It's not a diagnosis for her.

I'm sorry to hear that you are having such an diffcult time with her. But I suspect that trying to get the information you want will be inpossible and will distract you from getting the help she needs.

Is she under CAMHS? what support are they giving for her problems ? Is she in school ?

Is she displaying signs of attachment disorder and if so, is she getting specialist help from eg PAC?

marmalade999 Wed 05-Oct-16 18:50:58

Sorry to hear you are hitting a brick wall. I know our lo birth family have some serious health problems which we were able to access information on prior to the adoption. Because there were potential serious genetic risks birth parent consented to shared the tests she had. This was because she was concerned lo might inherit the condition. If birth parents consent then you can have the information..... I'm not sure how you could logistically get this. It's pretty rubbish isn't it.

BeckerLleytonNever Thu 06-Oct-16 16:28:13

Marmalade I only had limited info on genetic illnesses.

As a parent don't youthink we are fully in our rights to know where our kids came from and any gentic defects that can and will affect the child as they get older?

ive inherited many things from my bloodline, of COURSE someone is going to get things down the lines.

as for camhs, to call them shit would be a compliment to them.

there must be a way to help my child more, im not taken seriously even though I know about the bloodline illnesses, I haven't even mentioned how many things DCS got, ALL mfrom the bloodline

and shes now homeshooled by me and another tutor, she couldn't cope in any school she went to with her illnesses.tried but the school system let us all down completely.

henrythegreenengine Thu 06-Oct-16 20:13:28

I have name changed as this could be identifying.

We can access the genetic details of DD's disorder, should we need to, as the genetics service have this information, and the distant relative who had the testing to identify the gene consented to relatives having that information. This is a specific gene, in a specific disorder.

Of course you cannot have carte blanche to access birth family's medical records. I honestly can't comprehend how you think that could be acceptable.

From what you've posted, and I know you'll be being vague to remain anon as we all do, but from what you've posted, I'm not sure you're talking about a specific gene issue? No one has their entire DNA on record as routine, that would only happen as part of a research or other project, not in normal medical care. There is no identified gene involved in most psychotic illnesses. Something like 22q deletion syndrome can increase the risk of a psychotic illness, but your child would have other problems pointing to that genetic diagnosis.

It sounds like you're frustrated you don't have your child's family medical history. That is adoption, unfortunately. No matter how detailed the reports are, there are always other things to know, and uncertainties. It's frustrating, and one of the down sides of adoption. It's one of the reasons adoptees contact their birth families, to find out that medical history.

I'm amazed how much we know bout DD's birth family. That is useful for us, certainly. But if I was in BF position, I would be fuming at the breach of confidentiality. The CPR alone details BF's entire life and medical history, that's without the medical report, and the CPR was not shown to BF for them to consent to me knowing this. It makes me rather uncomfortable, really.

How would you feel about strangers having access to your medical record?

In summary, I'm not sure what you're after. If it's BF's DNA sequencing, then I'm baffled as to why you think this is appropriate or possible. If it's full access to BF's medical record, then again I'm baffled that you think this is appropriate without their consent. If you're just expressing frustration at this downside of adoption, then, yes, I hear you, and empathise, it's hard.

Your DD's problems are likely multifactorial. Distracting yourself focusing on having some sort of info about her DNA sounds like a dead end to me, and you sound busy enough dealing with a shitty situation, and I'm sorry about that.

fasparent Mon 10-Oct-16 12:40:45

may be this will help, don't know though.
NHS Genomes Project
www.Gonomes Project will have too apply

BeckerLleytonNever Mon 10-Oct-16 15:52:12

THnak you FAsparent. (OOPS, CAPS LOCK!)

fasparent Mon 10-Oct-16 21:05:32

PEASURE Becker , our DS was referred too NHS 100,000 Genomes Project
via CAMHS, would have not known about it otherwise.

marmalade999 Sat 15-Oct-16 14:01:10

We are not 'strangers' wanting carte blanche to birth parents medical records. We are parents wanting information that may help lo in the future!!!! I don't want to know how and when or why they have been to the doctors! The condition that we may (or may not) be faced with in the future was something we had to think seriously about. Why we shouldn't have the information if it's available is ridiculous. Yes it's adoption and there are many gaps. It doesn't mean it's right.

BeckerLleytonNever Sat 15-Oct-16 15:57:07

exactly , marmalade.

OurMiracle1106 Sat 15-Oct-16 18:40:05

As a birth parent I would be extremely worried if you could access my medical records. Of course anything that may affect my son is shared with his parents but theoretically it could be subject to abuse should this be allowed
Things like birth control and female only illnesses (my child is male) I feel have no impact on my son at his age (primary school age)

Also there may be things on there that isn't appropriate to be shared.

However should my sons Parents ask for information on my epilepsy for example I would happily give them all the information that I can , however my right to privacy is paramount, I don't feel happy with full medical acces in any circumstances. Only genetic conditions fair enough. I permitted access to my medical records for reports but I have since withdrawn this as he has now been adopted and I felt social services no longer needed access to them.

Contact can be very useful to ask questions

OurMiracle1106 Sat 15-Oct-16 18:41:50

It also feels very one sided I don't as a birth parent know if either of my sons parents work, have brothers sisters etc yet they are entitled to know everything that has happened in my life and would then want full access to my medical records? Therefore would know if I went doctors for Anything they could read all notes etc

Henrythegreenengine Sat 15-Oct-16 20:23:42

Miracle I agree, it feels odd to have so much of a one sided information stream.

No, BP are not strangers as such, but they didn't choose us. Usually, they didn't choose to have their children parented by us. They owe us nothing, really. We have their children. You want more of their life? Do you have any empathy with the people whose children you parent, as independent, autonomous humans? Our BP have been utterly failed throughout their lives, and had much of their private history shared with us, at least two other couples, courts, panels, and more. Their deepest, darkest parts of their stories. And you would have that continue until the child it's an adult? BP in our case have had the worst thing happen to them (lost their child), you would have them lose their privacy for ever more, too? I struggle with why you think that is acceptable. We are strangers to BP. They don't know our names, whether we are fat or thin, conservative or liberal, religious or atheist, unemployed or landed gentry.

OP, it isn't clear what information you are wanting? Do you feel your child's medical reports were lacking prior to the adoption?

The genomes project requires a medical consultant invite, and a diagnosis. Do you have these?

Do you participate in contact, as Miracle asks? This is exactly the stuff contract can help with. "DD is doing well, but seeing the doctor about xyz. Do you know of any family history I can share with DD's doctors?"

I strongly suspect here there is no further info that would help. Psychosis is multi factorial. I really would concentrate on fighting for what your daughter needs with her symptoms, rather than wasting head space on the heritability of her symptoms. Unless you are talking about a specific genetic disease which knowing if a gene has already been isolated would help with? Something like Marfan syndrome etc.? Are you asking about a single gene disorder? If so, perhaps letterbox could be utilised?

allowlsthinkalot Sun 16-Oct-16 20:59:09

I think others have already answered your question very well. I don't think you would gain anything even if you could access the birth parents' medical records.

You already know that there is a family history of psychotic illness in her birth family. Further details wouldn't make any difference to your dd's treatment or diagnosis.

allowlsthinkalot Sun 16-Oct-16 21:02:05

And as others have said, mental illness isn't directly inherited. So a psychotic illness in a birth parent, say, does predispose your dd to mental illness generally, not just the specific illness that the birth parent has been diagnosed with. Trauma and life experiences will also have played a part.

OurMiracle1106 Sun 16-Oct-16 21:02:53

Another concern would be if my sons parents were to access my medical records and I've just been sterilised or found out I was pregnant this could change how they felt about me and lead to false hope or resentment

"She could have had another one but decided not to"
"Or she's pregnant, when this one gets taken maybe we will be able to adopt it"

This could lead to resentment and heart break. Should a birth parent fall pregnant they might decide not to keep the baby, to give it up privately for adoption or may be in a position to look after it leaving feelings of resentment

OurMiracle1106 Sun 16-Oct-16 21:06:51

However you could ask social worker if they could ask birth parents at what age was they diagnosed and when did they first get symptoms

I am epileptic, I have shared that I was 18 when seizures started up to that point I was perfectly healthy, how often, wwhat's triggers are thought to be, how often, warning signs to look out for and when I started having day seizures I wrote to them with contact to tell them what had changed etc

I hope this information will help them should our son be epileptic but he could be completely different to me

BeckerLleytonNever Mon 17-Oct-16 16:05:38

genetic inherited things are a concern for me and my child.

I have a right to know that.

I am not interested in BPs personal lives , but if my DC is not getting the right diagnosies and GPs and hospitels just have to take my word for it, then my poor DC is not getting the help she needs.

the BPs have a police injunction and therefore there is no contact AT all. they didn't want my child, they literally threw her away.

social services and CAHMS have been shittier than shit and no help at all, and now I have this fucking PIP fiorm to fill in on DCS behalf as she cant function and do it or express herself.

Im asking advice on obtaining medical records in the genes, genetic, NOT a who do think you are history.

OurMiracle1106 Mon 17-Oct-16 18:13:53

it may be worth speaking to social services and see if they can apply to court for access to parents medical records but just how much would be disclosed would be down to the court and would only be disclosed to a relevant adoption support worker and information would then only be shared if appropriate.

I was told when my son was in foster care they could get access if it was deemed necessary.

marmalade999 Mon 17-Oct-16 20:25:59

Are you entitled to any support through the adoption social fund?? Can't remember if it's actually called that??
I don't really card if bm has been to the doctors for an ingrowing toenail or to discuss her drug abuse. I just think it's a bl88dy shame significant information can't /won' t be shared. More gaps in tge lives of our lo. This isn't about just the parents this is about the l.o. at the end of the day and getting the help and support that might be available with the correct information. It might be there isn't any useful information medically but in this day and age we should have moved forward to professionals having more joined up thinking.

henrythegreenengine Mon 17-Oct-16 20:39:11

It sounds like you're going through a tough time.

It sounds like you don't have much empathy for DD's birth parents.

Genetic medicine is complicated. Even something like a family history of heart disease can't be identified easily as it's not a single gene problem. If your DD's problems are mental health related, then it's unlikely there is any 'genetic' information for you. No one is keeping this information from you, it won't exist.

Doctors cannot be breaking confidentiality. It's an absolute. It's hard in this situation, as adopters, we'll never know every bit of medical family history. However, I think dwelling on this is not helpful.

If you're worried about a single gene problem, then asking if letterbox could be used is an option. But unless it's a single gene problem you're thinking about 'genetic information' simply won't exist. No one is keeping it from you. It won't exist.

My DD is at risk of a single gene disease, and the gene that runs in her family has been isolated. This is when genetic medicine can help. From what you have said, I don't think it can help.

BF are people, with rights to privacy. If they were capable of putting your DD first, she may well be living with them, and not you (I know this isn't always the case, and adoptions happen for other reasons, but commonly). I would imagine that if you're approaching medical encounters with the attitude that genetics are the answer, that this is hampering communication with medical professionals about your DD's symptoms and diagnosis.

Have medical staff said it would be helpful to have details of familial genetic testing? Have medical staff said they are concerned about a single gene illness?

henrythegreenengine Mon 17-Oct-16 20:40:23

It's not a lack of 'joined up thinking'. It's about the principle of medical confidentiality.

marmalade999 Mon 17-Oct-16 21:00:00

Henrythegreenengine can work in a joined up's not the done thing here and now but I truely believe it should be available in years to come. I work in the medical profession and understand completely confidentiality... but when lo are affected (potentially) then there should be some allowances.
Please do not judge on the "lack of empathy" front's getting the facts for the benefit of lo if appropriate.
It's a very frustrating situation for those immediately affected by this. All I am saying is couldn't it be potentially useful to access such information?? One professional looking at clients records and relaying information that might be helpful. What is wrong with that????

henrythegreenengine Mon 17-Oct-16 21:15:57

What sort of information are we talking about here?

I don't think it is useful for OP to know BM has a diagnosis of bipolar disease vs schizophrenia. That distinction won't actually affect her DD's care at all.

What information would you like OP? Beyond some sort of generic "I want genetics information!"

bostonkremekrazy Mon 17-Oct-16 21:32:37

Becker - the appropriate past medical history of the BP would/should have been contained in your child's PAR. If there was any risk of a genetic inherited condition you should have had opportunity to discuss this with the adoption medical advisor prior to you meeting your child. If this was not done could you ask SS if they could arrange a meeting for you with the adoption medial advisior now - s/he will be able to discuss the birth parents available information and tell you how it may affect your child genetically.

You do sound very angry about the services involved and about filling in PIP forms etc - is there anyone you can turn to for counsel about this?

I absolutely agree that the BPs have a right to privacy now. Everybody has the right to have their medical notes closed and it would be a huge invasion of privacy to be able to give out information to another person without that patients knowledge or permission. One professional looking at clients records and relaying information is hugely hugely invasive and the data protection act would (thankfully!) never allow it.

When the child is adopted the link between them and BM/BF is severed. You cannot then keep returning to BM/BF for more info for medical or other reasons, it simply isn't fair to the birth family - or to the adopted child placed in a new family. You cannot live between the two. Social services - and the medical advisor hopefully collates all they can, all that is needed - particularly if there are genetic factors, for the new GP to continue to build a picture for that child in order for a diagnosis to be made if appropriate. If questions are being asked about a child's health then a referral to a geneticist is made and more specific assessment is made.

My dc are under the care of a geneticist - some things you can test for, some you cannot, some you can predict, some come out of the blue with no previous history - having a DNA sample from the birth parents usually does not even make a difference....

Becker - i'm sorry its tough for you at the moment. Many of us have been seem to be spending lots of energy on a fight you will never win. Try the adoption support fund for help - may be more help than CAMHS.

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