5 ms·

But thats not the point. The question is whether you can make data public that, while it belongs to you, also belongs (partially) to other people (your siblings

by patall 9y ago

But thats not the point. The question is whether you can make data public that, while it belongs to you, also belongs (partially) to other people (your siblings, parents, unborn children ...) who might not want to have their genetic data public. Sure, there is may be no risk to you and a data repository like the one described contains an enourmous value for society in the form of biomedical data but that does not mean you have to give it to everyone without knowing their intention. Especially if they end up knowing something about you that you don't.

Real_S 9y ago
This is an incredibly important point! Openly sharing your genetic information makes both you AND your relatives more vulnerable, with vulnerability decreasing as relatedness decreases. It also reveals potentially sensitive information about family traits.
- jhbadger 9y ago
  That's one (rather selfish) way of thinking about it. Another way of thinking about it is that you (and everybody else) is better off if more genomic data is available for research. It's worth remembering that genomicists like George Church and Craig Venter have made their genomes publically available for all to access.
PunchTornado 9y ago
I think i have the right to do anything i want with my genome, including making it public. It's my genome ffs, it's me. If i don't have this right with my genome then I don't have any rights at all.
- Ao7bei3s 9y ago
  Except it really isn't entirely your own genome. You share most of it with your relatives, and to lesser extents, the rest of us and all other beings. Since it's a shared resource, they should have a say. Can you follow the argument if we flip it around? Your right to do anything you want should include not making it public. Others publishing "theirs" would mean publishing yours, whether you want it or not.
  - PunchTornado 9y ago
    It is entirely my genome. Over 99.9% of the genome is identical to every human being. And that genome is made public (the reference genome) and updated regularly as we understand more about the DNA. Even identical twins don't have the same DNA. So it's not like I make public another person's DNA.
- akvadrako 9y ago
  Of course - this is total bullshit - trying to tell people what they can do with their own dna.
- patall 9y ago
  Sorry but no, just because something is yours it does not mean you can do with it whatever you want (I understand that this is a totally non-libertarian view). If you find uranium on your plot of land, you also cannot sell it to whoever you want. And the human genome is similarly seen as something protected, just look at how CRISPR experiments on human embryos are highly controversial.
  - bpicolo 9y ago
    > And the human genome is similarly seen as something protected It's not, I can publish/sell/do whatever I want with any of my genomic data I have desire to

by patall 9y ago

Real_S 9y ago

This is an incredibly important point! Openly sharing your genetic information makes both you AND your relatives more vulnerable, with vulnerability decreasing as relatedness decreases. It also reveals potentially sensitive information about family traits.

jhbadger 9y ago
That's one (rather selfish) way of thinking about it. Another way of thinking about it is that you (and everybody else) is better off if more genomic data is available for research. It's worth remembering that genomicists like George Church and Craig Venter have made their genomes publically available for all to access.

PunchTornado 9y ago

I think i have the right to do anything i want with my genome, including making it public. It's my genome ffs, it's me. If i don't have this right with my genome then I don't have any rights at all.

Ao7bei3s 9y ago
Except it really isn't entirely your own genome. You share most of it with your relatives, and to lesser extents, the rest of us and all other beings. Since it's a shared resource, they should have a say. Can you follow the argument if we flip it around? Your right to do anything you want should include not making it public. Others publishing "theirs" would mean publishing yours, whether you want it or not.
- PunchTornado 9y ago
  It is entirely my genome. Over 99.9% of the genome is identical to every human being. And that genome is made public (the reference genome) and updated regularly as we understand more about the DNA. Even identical twins don't have the same DNA. So it's not like I make public another person's DNA.
akvadrako 9y ago
Of course - this is total bullshit - trying to tell people what they can do with their own dna.
patall 9y ago
Sorry but no, just because something is yours it does not mean you can do with it whatever you want (I understand that this is a totally non-libertarian view). If you find uranium on your plot of land, you also cannot sell it to whoever you want. And the human genome is similarly seen as something protected, just look at how CRISPR experiments on human embryos are highly controversial.
- bpicolo 9y ago
  > And the human genome is similarly seen as something protected It's not, I can publish/sell/do whatever I want with any of my genomic data I have desire to