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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
by Amorymeltzer 11y ago
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.
- DrScump 11y agoExactly. 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.