Helping adult adoptee access medical history

[QuercusIlex]

Hi,
Someone I'm very close with was adopted and wants to access all medical history. Problem is, even if we have access to some of it that was collected at the time of adoption, we don't have access to all records. I've been investigating and contacting NHS services, and we have landed on one that can help but still doesn't offer the full ones - only up to the point of adoption.

We contacted social services for further help. Luckily birth father has passed, but birth mother is still alive and SW was trying to push for reunion, despite my friend saying that this is not what she wants (due to circumstances leading to removal). All we got from SW was "maybe try to send her a letter, see how you feel and go from from there...?" which was not helpful in the least and only upset my friend. She doesn't want to take a DNA test due to being related to very unpleasant individuals who could potentially get a hold of her details.

She's the sweetest, most incredible person I know and it breaks my heart to see her like this. Has anyone gone through the same and do you have any advice about this?

Hi. Do you mean she wants her own medical records or info on her birth relatives?

Any information about hereditary diseases in her bio family.

Ah, she needs birth parents to agree to that, which is why the SW suggested she contact birth mum direct.

The NHS is bound by data protection laws and they will not reveal someone else's medical details.

I found something odd in my daughter's file - it suggested she was bm's 4th child, not 3rd as we had been told. I got SW to ask her and she clarified it was a mistake. But tbh I only have her word for that. She lied about a lot of medical things.

The other option is to get a referral to a genetics clinic and see if tests reveal anything. Or making contact with birth family through an Ancestry test.

I think there are DNA test providers who handle data protection differently from the large American ones. That's why a friend of mine went with a Swiss provider I think.

It's good you could clarify that about your daughter's history, sometimes little things can make a big difference and leave you with more questions. It's a shame her birth mother lied about things relating to health and I feel for your daughter, it's not fair on her.

That's exactly the problem. Why should birth family get to conceal medical information that is relevant to an adoptee? Why should adoptees be told over and over to make contact with people that they explicitly said they don't want to contact? Obviously there's individual privacy, but for health matters that relate to the adoptee, they should have a right to know those without having to contact people who potentially have been their abusers.

Atm we're waiting for an appointment with a NHS service but we'll investigate about getting the referral for genetic testing, thank you for the suggestion.

That's useful to know, will look further into it! Thank you. Do you know the name of the Swiss provider provider your friend went with? Would she recommend them?

Adoptee here.

The adoptee is not entitled to anyone else's official medical records.

In theory, insight into medical history should be as complete as possible but at the time of adoption the parents (and even their parents) may have been quite young and things don't necessarily manifest until later. Or their lives are chaotic, etc etc. There could be a whole host of reasons why even with the best intentions, the info isn't there. It would be kind if they agreed to update voluntarily but asking also shouldn't necessarily be the adoptee's responsibility. She can push for an intermediary to do it and I would.

Is this a very specific inherited situation?

Personally, I'd move on from trying to get information from family and get that genetic test done if it's vitally important and consider all options before having to rely on birth family.

Also, in terms of matches, you don't have to switch on this feature when you do a commercial DNA test.

For context, both my maternal great-grandmother and grandmother died from gynecological related cancers. This was nowhere on my notes (she GM died decades later.) I found the info out online - I had contact with an uncle over Ancestry- and nudged him about whether there was anything I needed to know. He goes: "Oh, I was getting around to telling you about xyxz." I have two daughters too, which I had said.

I get it's annoying, I just think pursuing them is going to be endlessly frustrating.

Why should birth family get to conceal medical information that is relevant to an adoptee?

Because you dont lose your right to privacy just because you have a child, or because someone in your family has a child adopted. Thankfully.