US government should buy them, not for the data, but the research and disease information. That was the most eye-opening thing about the results. Until I got results, my family had no idea that we carried the CF gene.
And as far as I’ve researched it is nowadays very hard to deny the finnish biobanks of access, storage and sharing of your collected samples. Which are used as a marketing leverage to honeypot healthcare investors and researchers to Finland from abroad by granting access. The sample data is “anonymized”. I would like to opt out, but it is made so hard that it is generally impossible. Nobody asked if this is okay to us or not. And we are talking about private data that was collected for national research.
The least the legislators could’ve done for the participiants would’ve been to make an effective way to opt out from the databases, and deny all personal collection in the future. No such general solution available.
Disgusting from privacy point of an individual. And alarming that your state does something like this.
US government should buy them, not for the data, but the research and disease information. That was the most eye-opening thing about the results. Until I got results, my family had no idea that we carried the CF gene.
CF being short for what, in this case?
Probably cystic fibrosis
Some countries, like Finland, already started collecting their population’s DNA sequences of willing individuals for research purposes.
And as far as I’ve researched it is nowadays very hard to deny the finnish biobanks of access, storage and sharing of your collected samples. Which are used as a marketing leverage to honeypot healthcare investors and researchers to Finland from abroad by granting access. The sample data is “anonymized”. I would like to opt out, but it is made so hard that it is generally impossible. Nobody asked if this is okay to us or not. And we are talking about private data that was collected for national research.
The least the legislators could’ve done for the participiants would’ve been to make an effective way to opt out from the databases, and deny all personal collection in the future. No such general solution available.
Disgusting from privacy point of an individual. And alarming that your state does something like this.