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Comment on YSK that the United Kingdom created the Biobank, the largest health study in the world. 500,000 volunteers have their blood, genetic and health data shared.

golli@sopuli.xyz ⁨2⁩ ⁨days⁩ ago

I am quite torn on this one. Of course this can be a tremendous resource, but at the same time when volunteering genetic and medical data you are not just giving away your own, but also information about others, who didn’t get to make that decision.

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jimmy90@lemmy.world ⁨1⁩ ⁨day⁩ ago
www.ukbiobank.ac.uk/…/protecting-the-data/

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Cevilia@lemmy.blahaj.zone ⁨1⁩ ⁨day⁩ ago
How?

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- golli@sopuli.xyz ⁨1⁩ ⁨day⁩ ago
  As others have already answered, you share DNA with relatives. Anonymisation is certainly good, but I wonder how well it works with something so inherently personal.
  
  Some areas are conserved quite well, so you can find inferre the degree of kinship quite well. Another aspect is that imo one of the dystopian uses of DNA is for health insurance. And for that you wouldn’t necessarily need to know whether someone has a certain gene or not. It would probably be good enough to work with probabilities, if you know someone else in the family has a certain gene.
  
  But I am probably pessimistic here, because of course there is tremendous value for research here.
  
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  - Cevilia@lemmy.blahaj.zone ⁨1⁩ ⁨day⁩ ago
    Fortunately, health insurance isn’t a concern because it’s not really a thing here in the UK.
    
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- qaz@lemmy.world ⁨1⁩ ⁨day⁩ ago
  You also share the partial genetic information of your relatives
  
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  - Cevilia@lemmy.blahaj.zone ⁨1⁩ ⁨day⁩ ago
    As I understand it, you only share half of your DNA with your parents and siblings, even less with more distant relatives, and it’s not easy to tell which bits of DNA come from where. Also the records are anonymised so it’s even harder to figure out which person you can infer information about.
    
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    RamenDame@lemmy.world ⁨1⁩ ⁨day⁩ ago
    Well, for a geneticists it is „easy“. In this paper which is a little older they just look at the Y-Chromosome and the last name, something men share with their fathers, and public accessible data (at the time). The pedigree is resolvable. Link
    
    Therefore it is important, that this data is access restricted. For this we have EGA
    
    So using for profit services like MyHeritage is risky and stored on servers you might not want your data on.
    
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