Comments on: The Havasupai Indians and the Challenge of Informed Consent for Genomic Research http://www.genomicslawreport.com/index.php/2010/04/21/the-havasupai-indians-and-the-challenge-of-informed-consent-for-genomic-research/ News and analysis from the intersection of genomics, personalized medicine and the law Tue, 07 Feb 2012 00:02:31 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: luisa http://www.genomicslawreport.com/index.php/2010/04/21/the-havasupai-indians-and-the-challenge-of-informed-consent-for-genomic-research/comment-page-1/#comment-13993 luisa Wed, 20 Apr 2011 12:46:08 +0000 http://www.genomicslawreport.com/?p=3201#comment-13993 L a legge sulla Privacy deve essere rispettata da tutti i Paesi Non c'è progresso sociale se non si rispettano i Diritti degli esseri umani, sia bianchi o colorati. Ogni persona deve essere rispettata nella propria scelta di vita, di appartenenza, di culto. Per me il Popolo Indiano d'America è un grande Popolo, con tradizioni, cultura e amore per la Natura particolari. Gli altri, noi, dovremmo imparare da loro!Ciao a tutti Voi Fratelli luisa - dall'Italia Europa - L a legge sulla Privacy deve essere rispettata da tutti i Paesi Non c’è
progresso sociale se non si rispettano i Diritti degli esseri umani, sia
bianchi o colorati. Ogni persona deve essere rispettata nella propria
scelta di vita, di appartenenza, di culto. Per me il Popolo Indiano d’America
è un grande Popolo, con tradizioni, cultura e amore per la Natura particolari.
Gli altri, noi, dovremmo imparare da loro!Ciao a tutti Voi Fratelli
luisa – dall’Italia Europa -

]]> By: Kendall Morgan http://www.genomicslawreport.com/index.php/2010/04/21/the-havasupai-indians-and-the-challenge-of-informed-consent-for-genomic-research/comment-page-1/#comment-6319 Kendall Morgan Thu, 22 Apr 2010 14:52:21 +0000 http://www.genomicslawreport.com/?p=3201#comment-6319 Another resource for informed consent language comes from The Electronic Medical Records and Genomics Network, available from the National Human Genome Research Institute at http://www.genome.gov/27526660. The committee that developed this language was chaired by Laura Beskow of the Duke Institute for Genome Sciences & Policy and was developed primarily for the collection and storage of human biospecimens and data for future research. (There will be more to come from Beskow on this: Her research is focused on informed consent issues and she has new ARRA funding from the NIH to explore “Ethical Approaches to Genotype-Driven Research Recruitment.”) Another resource for informed consent language comes from The Electronic Medical Records and Genomics Network, available from the National Human Genome Research Institute at http://www.genome.gov/27526660.

The committee that developed this language was chaired by Laura Beskow of the Duke Institute for Genome Sciences & Policy and was developed primarily for the collection and storage of human biospecimens and data for future research. (There will be more to come from Beskow on this: Her research is focused on informed consent issues and she has new ARRA funding from the NIH to explore “Ethical Approaches to Genotype-Driven Research Recruitment.”)

]]> By: Jeremy Grushcow http://www.genomicslawreport.com/index.php/2010/04/21/the-havasupai-indians-and-the-challenge-of-informed-consent-for-genomic-research/comment-page-1/#comment-6318 Jeremy Grushcow Thu, 22 Apr 2010 13:36:56 +0000 http://www.genomicslawreport.com/?p=3201#comment-6318 Dan - the open consent model does a great job of addressing the privacy concerns, but I'm curious about your thoughts on how to address the technological advances that we can't predict at the time samples are taken (part of the problem with the Havasupai samples). When (if ever) would you envision having to go back to (for example, PGP) participants to get their consent for a new use for the existing samples? Dan – the open consent model does a great job of addressing the privacy concerns, but I’m curious about your thoughts on how to address the technological advances that we can’t predict at the time samples are taken (part of the problem with the Havasupai samples). When (if ever) would you envision having to go back to (for example, PGP) participants to get their consent for a new use for the existing samples?

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