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This is how we found out that my daughter has cystic fibrosis and have been able to treat her from a few weeks after birth. The result is that she'll probably l
by trollian 8y ago
This is how we found out that my daughter has cystic fibrosis and have been able to treat her from a few weeks after birth. The result is that she'll probably live a normal length life rather than dying in adolescence.
So I'm fairly positive on this program...
- megaman22 8y agoI hope that her chemo and radiation regimes were light. I worry very much that mine have shortened my life expectancies.
- Godel_unicode 8y agoThey would have been non-existent since neither chemo nor radiation have any bearing on CF. https://www.mayoclinic.org/diseases-conditions/cystic-fibrosis/diagnosis-treatment/drc-20353706 https://www.mayoclinic.org/diseases-conditions/cystic-fibros...
- greglindahl 8y agoWhy are people downvoting this comment? Even if you think the current system is wrong, you should be thinking of how to fix it without losing the benefit outlined by this commenter.
- djsumdog 8y agoBecause you can determine this information and then not store the DNA.
- greglindahl 8y agoThat's why people are downvoting this guy? I totally agree that there's a more privacy-respecting solution. I was asking why people were downvoting this comment.
- matthewmacleod 8y agoBecause it fundamentally misses the point. Nobody objects to testing newborns for diseases. That’s awesome. Keep doing it. We all support that program, so there’s not much point in telling us how good it is. Almost entirely unrelated to that is the storage of samples after they’re taken. That’s the actual problem, and solving it has not effect on the first issue there.
- jasonlotito 8y agoWhile I hate getting meta and discussing voting in HN comments, the best thing to do in the future is instead of asking why votes are going in one direction or another, instead, either vote yourself, or if it calls for it, offer up on-topic commentary. Comments that stir good on-topic discussion should never be down voted, regardless of whether you disagree with them or not, or even if they are missing a point. Down voting a comment like the parents is, at best, insulting the very premise of good HN discussions.
- greglindahl 8y agoI hate getting meta, too, and I almost always vote up instead of commenting. In this case I'm pretty disappointed by the replies I got to my question.
- thankthunk 8y agoBecause the guy was justifying taking and keeping the DNA material for perpetuity with his anecdote. It's the quintessential example of authoritarianism defense. One instance of good justifies authoritarianism and violation of individual liberties and freedom.
- cft 8y agoYou can run the available tests and then discard the DNA
- deleted 8y ago[deleted]
- bigbugbag 8y agoBecause it's not relevant to the issue discussed: storing and selling DNA of Californian born people without them knowing or being told their rights.
- jcims 8y agoThe testing is amazing. The archival is Machiavellian.
- ocdtrekkie 8y agoThis is good to know, and it's great that they're running these tests. The issue is not that they run these tests, but that the data is then retained for use by others, not for protecting your child. There is a middle ground between "we don't test for diseases" and "your kid's DNA is now public knowledge".
- bigbugbag 8y agoSorry but no, absolutely not. Please explain how keeping your daughter blood sample forever and selling it helped in any way ? Running a detection test is what helped your daughter and is not the issue at hands, it's keeping samples indefinitely and selling them that's problematic.
- srj 8y agoMy son was also tested for Cystic Fibrosis but in MA, to my knowledge his DNA isn't stored. I think CF is standard screening in all states, this website has a state-by-state list: http://www.babysfirsttest.org/newborn-screening/states http://www.babysfirsttest.org/newborn-screening/states