We aren't in California. We opted for this kind of generic screening even with informed consent.
I think people should be given the choice, but detecting over 65 diseases from one pin prick is very good "value." If they're using that data in an anonymised form for research, meh, whatever.
I do have some minor concerns related to police use of the data, as police have a history of misusing DNA and or misunderstanding the significance of a match or partial match. People have been convicted ONLY based on DNA and supposition, and that isn't scientifically sound.
Plus who knows when we'll get all Minority Report/Gattaca and start trying to predict crime/health/intelligence based on DNA.
OP here, as a father of two (soon to be three) I'm all for the genetic screenings with the informed consent, it's what happens (or doesn't) afterward that worries me. The fact that the state claims ownership of this and sells the data out to whoever is what worries me. There should be a clear opt-in to allow them to preserve it with the default being the general statistics get record and the sample winds up in a dumpster.
Seven states offer that data up for research, often with no informed parental consent; four charge a fee for it. There is no requirement to be informed and no assurance that the sample/data can be destroyed. Research without informed consent is not, and should never be allowed.
These samples are increasingly a huge amount of personal data; de-identified genetic data doesn’t exist.
Exactly. It would be different if the data given was limited to the specific segments relevant to the research rather than the whole genome.
Look at what advertisers are doing with web tracking, beacons, cookies, etc.: taking slices of your privacy and assembling them into a coherent, individualized profile that is the sum of each info-leak's parts.
I think people should be given the choice, but detecting over 65 diseases from one pin prick is very good "value." If they're using that data in an anonymised form for research, meh, whatever.
I do have some minor concerns related to police use of the data, as police have a history of misusing DNA and or misunderstanding the significance of a match or partial match. People have been convicted ONLY based on DNA and supposition, and that isn't scientifically sound.
Plus who knows when we'll get all Minority Report/Gattaca and start trying to predict crime/health/intelligence based on DNA.