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The U.S. Department of Health and Human Services has relaxed some rules that were proposed in September. The rules would have likely stopped small hospitals and clinics from donating tissue samples to researchers:
Federal officials have dropped a controversial plan to impose new rules that researchers say would have made it much harder to use patient blood and tissue samples in research. The final Common Rule released this morning omits these provisions, but leaves some other changes intact.
Biomedical and university research groups that lobbied against the biospecimens provisions are relieved. "We are very pleased at the amount of time, attention, and effort that went into reviewing the comments. The process worked," says Lizbet Boroughs, who follows biomedical research policy for the Association of American Universities in Washington, D.C.
[...] A proposed rule released in September 2015 contained some uncontroversial revisions, such as requirements for simpler informed consent forms and exemptions for low-risk studies such as some social science research. But the proposal set off alarm bells because it would have imposed new rules for research using blood, urine, tissue, and other specimens leftover from clinical care or a specific research study. Those samples can currently be used for new research without the donor's consent if they are stripped of names and other identifying information. But the proposed rule would have required written consent for broad future use of such deidentified samples. Institutions would have had to set up systems to track the consent data.
(Score: 0) by Anonymous Coward on Monday January 23 2017, @04:33AM
So what if someone types the DNA? Per TFA:
> Those samples can currently be used for new research without the donor's consent if they are stripped of names and other identifying information.
Isn't that enough privacy for your precious bodily fluids (and other removed tissue)?
(Score: 0) by Anonymous Coward on Monday January 23 2017, @04:39AM
They can take your 'biological waste' perform research on it, then patent/copyright/sublicense YOUR biological matter, without your consent or financial remuneration.
Just reflect on that a moment. We keep getting told to respect copyrights, and patents, and the LAW, all the while having none of those protected for the individual (just look at the abuses of people's material on youtube, including original creators who sublicensed their works then get takedowns against it by the large corporations, or wholesale theft of their copyrighted works as in the case of that stock photo company (something with a G...)
The lack of protections here is EXACTLY OPPOSITE of what we should have. Our biological matter is literally our most intimate IP, and given how they run roughshod over every other right we have, this is THE ONE that should ABSOLUTELY UNDER NO CIRCUMSTANCES be compromised.
(Score: 2) by c0lo on Monday January 23 2017, @11:31AM
Yes they can. Since 1990, see Moore v. Regents of the University of California [wikipedia.org]:
To date, the first isolated immortal cell line, HeLa [wikipedia.org], reproduced itself by the metric tones [nytimes.com]. And I'd say the world is a bit better because of this.
Note that, just like "Alien resurrection", HeLa is no longer human but a hybrid [wikipedia.org].
Fortunately, the family still retained the "privacy rights" [wikipedia.org] over the HeLa cell lines.
https://www.youtube.com/watch?v=aoFiw2jMy-0 https://soylentnews.org/~MichaelDavidCrawford
(Score: 2) by takyon on Monday January 23 2017, @05:48AM
Genetic mugshot recreates faces from nothing but DNA [newscientist.com]
Soon enough, all that will be needed is a DNA sample to come up with a decent way to search facial recognition databases. It's easier to get into a facial database than a DNA database, so many criminals could be caught this way unless they live in a cabin in the woods.
For non-criminals, they could be deanonymized the same way, and important private information like genetic disorders or physical attributes could be gleaned from the genome.
Facebook and botnets full of IoT cameras could make it even easier.
[SIG] 10/28/2017: Soylent Upgrade v14 [soylentnews.org]
(Score: 0) by Anonymous Coward on Monday January 23 2017, @05:24PM
DNA can also be de-anonymized if they have the DNA of relatives on file. Its similar enough that they can make really good guesses using even non-immediate family like cousins and grandparents.