United Kingdom: Action for ME (AfME) news

Harvest your DNA & biological data to later profit health insurance firms who’ll be denying you or your relatives current & future coverage.

Quite possibly that’ll be the least of it in terms of eugenics.
There is no evidence of this. We need the NHS to work with academia and industry to develop treatments for our condition and that of others.
Maybe if they received several emails from interested UK participants it might prompt them to think about it.
Agree, emailing them is a great idea.
 
We need the NHS to work with academia and industry to develop treatments for our condition and that of others.

We also need to make them aware of the severity of disability in ME/CFS and the numbers affected, a picture which is almost certainly not captured via GP records. Studies like this have detailed questionnaires where participants are likely to be able to report it in their own terms.

There's also the fact that eventually the study hopes to offer individual feedback to people whose genetic screening reveals things they might need to know or act on, if they want to know. Among other things that should reveal what genetic conditions causing treatable disease or preventable deaths are least likely to be picked up until very late in the day, which is really important for future preventive screening programmes.

Studies like this are always a two-edged sword and I'd look into it in more detail before deciding to take part, but at first sight it looks if there are good arguments for doing so.
 
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