 Future generations are going to look at this generation’s laxity with genetic data and privacy in the sane way we look back at smoking, Jim Crow laws and fossil fuels. You can’t change your genetic data like you can a password and once it gets out it not only affects you both your relatives and your offspring. You carry a gene for a chronic disease that’s inherited? Now insurance companies know that about you, your kids and grandkids. Unbelievable privacy self own. 29 comments
 @carnage4life@mas.to The people who used those services and voluntarily submitted their genetic information deserve bad shit like this happening to them in a multigenerational way.  @carnage4life so disheartening where adopted or abandoned children have no other choices to find family in many situations without these tools…. @carnage4life Privacy concerns are why I refuse to take a recreational genetic test. And unfortunately, my refusal is insufficient as the science has evolved that they can extrapolate from relatives who have taken the tests. It’s a shame, since they are fascinating.  beyond insurance companies knowing, the number of racist/anti-semite billionaires who will be all too happy to buy this data in the hopes of using it for racial purity/eugenics/genocide scares the bejeebers out of me. the original nazis had IBM helping. this helps all future nazi wannabes. @mekkaokereke @carnage4life yeah you're right. I'm probably already screwed because my sister did one of these  Double fun: There might be a gene sequence that only appears in nature in exactly one individual: you! Your sister might have a similar sequence. Your parents might have a similar sequence. But this specific sequence only appears in you. Your mom and dad night have partial immunity from a condition. Your sister might have almost full immunity. You are the only human on earth with full immunity. The DNA bank can get a gene patent on your sequence. 🤡 Thanks sis! @mekkaokereke @nathans @carnage4life HeLa sounds like a random research descriptor it's also the Nordic Goddess of death, half alive, half dead but it stands for Henrietta Lacks everyone should know her story. and the story of her as she has lived on past her death, literally, bought and sold with nothing to her family, not even notification. she was genetic "property" @accretionist @mekkaokereke @nathans @carnage4life 'The Immortal Life of Henrietta Lacks' by Rebecca Skloot is an excellent book about her family. @deirdrebeth @accretionist @mekkaokereke @nathans @carnage4life There's an excellent recent article by Joan Walsh about a doctor who tried to save lives using the HeLa cells: https://www.thenation.com/article/society/roland-pattillo-henrietta-lacks-obituary/ @thenation @Swalsh @deirdrebeth @accretionist @mekkaokereke @nathans @carnage4life @thenation thank you for this link  @accretionist 👇 That's a HELL OF A WAY to find out that your family member's cells are being used in scientific research and treatment!! (From Wikipedia) @mekkaokereke @carnage4life @nathans @carnage4life The threat isn’t you - it’s anyone closely related to you. My mom did this and didn’t tell me first - and now it’s too late. Your parents, kids, siblings are all threats. Even cousins to a degree. I guarantee at least one of them doesn’t understand the risks or doesn’t care.  @carnage4life 23andme: "It's not a security breach. Our systems are simply defective by design."  @carnage4life And even more, that company (and a lof of the competitors) outsourced the gene sequencing to China. It's relatively certain that Chinese government has copy of the genetic database, since their laws require companies to turn in any data (without any legal process) when asked by the officials. @carnage4life tried so hard to get my mom not to do this for just these reasons, but she did it anyway. Furious.  @carnage4life Been screaming into the void about this for so many years. And we undoubtedly haven't even conceived yet of how this data will be used against us or our descendants, just because someone thought it would be fun to get a crappy report that they were 30 percent Italian or whatever. How stupid.  @carnage4life by that, you mean some pocket of white, wealthy, good old boys will be spending all their time promoting it and pooling every resource they have to shut down any attempt to change things while talking longingly about how great things were in the past? Sounds right. @carnage4life Precisely. We need a privacy bill of rights desperately. Covering all PHI, and NO HIPAA is not enough since everyone just makes you waive your HIPAA rights. @carnage4life you'd think a genetic caste system would be a sci fi dystopian nightmare far in the future then you realize how our insurance system works, how our private info is bought and sold, and you realize it's practically here, and the moral scruples to resist it in our politics aren't nearly as powerful as the financial incentives to implement it  @carnage4life sad to see that the idea of Americans have given up the fight for a sane public healthcare policy so the assumption is their grandkids will suffer from this.  |
Gregory's Server
@carnage4life to be fair, a sane society would have already forbidden discrimination on genetic basis for insurers, thus distributing the randomness across all of society; sadly, that's not the society we live in