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posted by Fnord666 on Monday January 23 2017, @04:24AM   Printer-friendly
from the sample-away dept.

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.


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  • (Score: 0) by Anonymous Coward on Monday January 23 2017, @04:39AM

    by Anonymous Coward on Monday January 23 2017, @04:39AM (#457542)

    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

    by c0lo (156) Subscriber Badge on Monday January 23 2017, @11:31AM (#457593) Journal

    They can take your 'biological waste' perform research on it, then patent/copyright/sublicense YOUR biological matter, without your consent or financial remuneration.

    Yes they can. Since 1990, see Moore v. Regents of the University of California [wikipedia.org]:

    In 1976, John Moore was treated for hairy cell leukemia by physician David Golde, a cancer researcher at the UCLA Medical Center. Moore's cancer cells were later developed into a cell line that was commercialized by Golde and UCLA. The California Supreme Court ruled that a hospital patient's discarded blood and tissue samples are not his personal property and that individuals do not have rights to a share in the profits earned from commercial products or research derived from their cells.

    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