Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation, 2025, Birch, Younger et al

[forestglip]

Except that the data has been anonymised, so siblings can be identified as such but not their contact details.

Oh ok. That's actually reassuring in terms of data privacy if the investigators literally have no way to identify a sample. I assumed the data was anonymized for analysis and for sending to other institutions, but that there would be some sort of master list identifying each sample in a secure (digital) vault. So all the identifying info is totally destroyed?

 

[Andy]

But the team could request sibling participants to get in touch to give their consent

We could put out a general request, yes.

surely there is some way of figuring out who's sample is who's retrospectively?

As far as I understand it, not from the genetic data backwards.

 

[Kitty]

Surely it would be difficult to do this kind of work without setting it up properly as a project, with its own ethics assessments and so on? It's hard to see how you could just bolt additional investigations on to DecodeME, unless they were explicitly consented during recruitment.

It's even more complicated if it's also looking to recruit children or young people under 18. Maybe I'm blowing it out of proportion, but it doesn't sound like something that could be done without setting up a project and obtaining funding for it.

 

[Andy]

So all the identifying info is totally destroyed?

As I understand it, a participant can't be identified from their genetic data, but people can request their data access consents to be changed. How that actually is achieved I leave to those who know how to do it.

 

[Andy]

Surely it would be difficult to do this kind of work without setting it up properly as a project, with its own ethics assessments and so on? It's hard to see how you could just bolt additional investigations on to DecodeME, unless they were explicitly consented during recruitment.

It's even more complicated if it's also looking to recruit children or young people under 18. Maybe I'm blowing it out of proportion, but it doesn't sound like something that could be done without setting up a project and obtaining funding for it.

You're not blowing it out of proportion at all, rather others are with the best of intentions minimising the hurdles in the way of achieving such a project.

 

[Sean]

A confounding factor might be that the healthy ones can only be classified as not yet having ME/CFS, not that they will never get it.

Important variable.