4 ms·

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 r

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.

blacksmith_tb 5y ago
I wonder if charities couldn't offer it as an incentive to attract more potential donors? Agree to participate, and we'll give you your sequence upfront, no data-release-requests needed? Obviously some people are trying hard not to be sequenced for any reason (because of privacy concerns apparently) but plenty of other people are interested in heredity, or health implications.
- ineedasername 5y ago
  I'm assuming the charities get a better rate, but typical home kits cost about $200... Not cheap to give out for free even if they get a 75% bulk discount. They're also not likely to get money from people like this who were deliberately working the system to avoid paying. Not only that, but insurance will often cover services like GeneSight that do this specifically as a health service.
  - blacksmith_tb 5y ago
    Sure, though here in the US I would bet most insurers would require a physician to order the test for it to be covered? Which presumably would happen only if they thought it'd be useful for diagnosing something, rather than that you were curious (esp. if your curiosity was about your heritage and not something clearly medical).
    - deleted 5y ago
      [deleted]
    - ineedasername 5y ago
      Yep, a physician has to order the test, but considering they are extremely useful in preventative medicine most people I know that have had it done didn't have any issue getting a doctor to order one.
  - renewiltord 5y ago
    If you don’t ask them for the info, they still pay the same rate. You’re only asking them for data they already have on you. And you’re still on the donor list. 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.
ineedasername 5y ago
Yeah, kind of like "how I got my food for free" and the punchline is you went to a local food bank. 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.
- souradip 5y ago
  I like to think that using this analogy, here you're going to the food bank and donating food (or your stem cells) while getting data on how many people liked it in return. 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 :)
  - ineedasername 5y ago
    That assumes this person is willing to donate-- from their statement on the organization I think they probably are, but the tone of the article beside their description of the organization seems to be "Yeah DKMS is good but look here's a cool loophole to get free stuff!". That's not exactly a message that will attract those interested more in helping people than free medical data about themselves.
    - 0xFF0123 5y ago
      The person you're replying to is the author of the article
      - ineedasername 5y ago
        That does not change anything about my comment. As I said in it, it did seem they were probably willing to donate if called upon. The real problem is what I said about the overall tone in my comment above. 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.
souradip 5y ago
Hiya, author here! I wrote the article to mostly encourage others to sign up to these charities to help accomplish their mission, the data generated as a by-product is just a cool side-effect!
- toomuchtodo 5y ago
  It’d be fine if the charity made it an option to donate an additional amount if you wanted your sequence provided to you, to cover their cost to fulfill the request (negating the need to fulfill a GDPR request). Otherwise, it’s just poor form and not to be emulated. Because one can does not necessarily mean one should.
  - souradip 5y ago
    I do, and I donate to these charities because it's a cause quite close to my heart. 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 :)
    - deleted 5y ago
      [deleted]
chrisweekly 5y ago
That's pretty harsh, and makes an ungrounded assumption that turns out to be not just uncharitable, but false. 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!"
- deleted 5y ago
  [deleted]

blacksmith_tb 5y ago

I wonder if charities couldn't offer it as an incentive to attract more potential donors? Agree to participate, and we'll give you your sequence upfront, no data-release-requests needed? Obviously some people are trying hard not to be sequenced for any reason (because of privacy concerns apparently) but plenty of other people are interested in heredity, or health implications.

ineedasername 5y ago
I'm assuming the charities get a better rate, but typical home kits cost about $200... Not cheap to give out for free even if they get a 75% bulk discount. They're also not likely to get money from people like this who were deliberately working the system to avoid paying. Not only that, but insurance will often cover services like GeneSight that do this specifically as a health service.
- blacksmith_tb 5y ago
  Sure, though here in the US I would bet most insurers would require a physician to order the test for it to be covered? Which presumably would happen only if they thought it'd be useful for diagnosing something, rather than that you were curious (esp. if your curiosity was about your heritage and not something clearly medical).
  - deleted 5y ago
    [deleted]
  - ineedasername 5y ago
    Yep, a physician has to order the test, but considering they are extremely useful in preventative medicine most people I know that have had it done didn't have any issue getting a doctor to order one.
- renewiltord 5y ago
  If you don’t ask them for the info, they still pay the same rate. You’re only asking them for data they already have on you. And you’re still on the donor list. 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.

ineedasername 5y ago

Yeah, kind of like "how I got my food for free" and the punchline is you went to a local food bank. 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.

souradip 5y ago
I like to think that using this analogy, here you're going to the food bank and donating food (or your stem cells) while getting data on how many people liked it in return. 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 :)
- ineedasername 5y ago
  That assumes this person is willing to donate-- from their statement on the organization I think they probably are, but the tone of the article beside their description of the organization seems to be "Yeah DKMS is good but look here's a cool loophole to get free stuff!". That's not exactly a message that will attract those interested more in helping people than free medical data about themselves.
  - 0xFF0123 5y ago
    The person you're replying to is the author of the article
    - ineedasername 5y ago
      That does not change anything about my comment. As I said in it, it did seem they were probably willing to donate if called upon. The real problem is what I said about the overall tone in my comment above. 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.

souradip 5y ago

Hiya, author here! I wrote the article to mostly encourage others to sign up to these charities to help accomplish their mission, the data generated as a by-product is just a cool side-effect!

toomuchtodo 5y ago
It’d be fine if the charity made it an option to donate an additional amount if you wanted your sequence provided to you, to cover their cost to fulfill the request (negating the need to fulfill a GDPR request). Otherwise, it’s just poor form and not to be emulated. Because one can does not necessarily mean one should.
- souradip 5y ago
  I do, and I donate to these charities because it's a cause quite close to my heart. 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 :)
  - deleted 5y ago
    [deleted]

chrisweekly 5y ago

That's pretty harsh, and makes an ungrounded assumption that turns out to be not just uncharitable, but false. 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!"

deleted 5y ago
[deleted]