Let me be blunt, costing charities time and money that they could use for their actual mission of helping people to find a life-saving match with a donor is a real shitty move. This is freeloading at its finest.
Not only that, but insurance will often cover services like GeneSight that do this specifically as a health service.
The difference between you and someone who doesn’t request is minuscule. An automated process sends someone a PDF. The world isn’t going to collapse under that weight.
The OP commented in a different thread around the same time as your rant:
> "I should probably say that my primary reason for signing up to a stem cell donor registry is to actually be a donor! This data is generated as a byproduct of signing up and is also quite interesting on a personal level.
I was thinking that framing it in a way to also find out interesting things about yourself might be a good way to encourage people who might not have thought about it to sign up for the first time, and this would be far more cost-effective than a traditional in-person donor recruitment drive, but let me know what you think!"
If you're really that interested it getting it done for the sake of curiosity the you can pay a variety of services about $200 for it.
I've seen too many kids with blood cancer who couldn't get a match, so please do consider signing up to your local charity :)
That's not exactly a message that will attract those interested more in helping people than free medical data about themselves.
Heck, just look at the title of the post. It was not "Helping to Save Lives can Get You Free Genotyping!"
No, instead it was just about how he got free genotyping, which just reinforced my impression of where the tone of the post's real focus was-- the free data, not helping people.
I will fully give the author the benefit of the doubt that it was not their intention to set that tone. But that was nonetheless the tone I saw, and clearly others did as well.
"I should probably say that my primary reason for signing up to a stem cell donor registry is to actually be a donor! This data is generated as a byproduct of signing up and is also quite interesting on a personal level. I was thinking that framing it in a way to also find out interesting things about yourself might be a good way to encourage people who might not have thought about it to sign up for the first time, and this would be far more cost-effective than a traditional in-person donor recruitment drive, but let me know what you think!
Because one can does not necessarily mean one should.
At present it's clearly not scalable to be sending GDPR requests one person at a time. I think perhaps if this kind of incentive brings more people to sign up than traditional donor recruitment drives (which is often much more than handling a request for data!) then these charities will provide easier, more scalable ways to access this data :)