Comments on: Privacy and whole genome sequencing http://blogs.reuters.com/great-debate/2012/10/11/privacy-and-whole-genome-sequencing/ Thu, 21 Jul 2016 07:57:19 +0000 hourly 1 http://wordpress.org/?v=4.2.5 By: adamclayman http://blogs.reuters.com/great-debate/2012/10/11/privacy-and-whole-genome-sequencing/#comment-73359 Thu, 20 Jun 2013 03:47:59 +0000 http://blogs.reuters.com/great-debate/?p=14571#comment-73359 So, here’s the problem: This editorial, published eight months ago, and the publication of the Privacy and Progress Report, have not resulted in the “prohibit[ion of] unauthorized whole genome sequencing without the consent of the individual.”
The Presidential Commission on Bioethics will meet again in August, in Philadelphia, PA, where “almost anything [still] goes”. The Presidential Commission could use its influence by, for example, only convening meetings in states that enact privacy protections for whole genome sequencing, or making a concerted attempt to influence state legislators who represent members of the Commission. Yet to my knowledge, no such efforts have been made, and as a result, anyone attending the Presidential Commission’s next meeting will not have remedy if a second- or third-party surreptitiously sequences their genome from “a minuscule sample of saliva” from “a discarded coffee cup”.
There’s a chasm between publishing a Report and enacting state legislation. Publishing an op-ed at Reuters doesn’t translate into state legislative proposals. Phone calls and meetings, and grassroots intergovernmental coordination will catalyze minimum privacy floors on genome sequencing through the last couple miles.

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By: jbrax http://blogs.reuters.com/great-debate/2012/10/11/privacy-and-whole-genome-sequencing/#comment-62971 Sun, 14 Oct 2012 13:47:30 +0000 http://blogs.reuters.com/great-debate/?p=14571#comment-62971 I don’t find value in seeking “predispositions”, primarily because I respect the power of self-fulfilling prophesy and placebo effect.

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By: LysanderTucker http://blogs.reuters.com/great-debate/2012/10/11/privacy-and-whole-genome-sequencing/#comment-62750 Fri, 12 Oct 2012 15:07:28 +0000 http://blogs.reuters.com/great-debate/?p=14571#comment-62750 I would be all for this if I didn’t know it would turn into a legal weapon. These privacy laws would immediately exclude people arrested, making it mandatory, like DNA logging of felons, that anyone arrested for anything have the sequencing done in order to show mental disorders or declare psychiatric conditions in a court room. I can see an entire industry, like private probation services that have a monopoly guaranteed by the State, popping up, whose sole intention is to elaborate on these conditions and keep the money rolling in by falsifying or embellishing on supposed mental conditions. Of course, like everything else, those that make the laws would first exclude themselves from it.

If it is such a good idea, and no doubt it is, there should be ample volunteers throughout the medical and scientific community to give the process momentum on its own merits and self evident benefit. No doubt those that seek laws to protect peoples privacy of information obtained from the sequencing will also be the ones who insist on it being mandatory for people to have done “for their own good”, as a step in the referral process, or standard procedure for doctor visits, etc.

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By: lukkiden http://blogs.reuters.com/great-debate/2012/10/11/privacy-and-whole-genome-sequencing/#comment-62659 Thu, 11 Oct 2012 20:56:04 +0000 http://blogs.reuters.com/great-debate/?p=14571#comment-62659 GATTACA was a movie about just that (albeit it is a bit dated). This has been a concern for as long as the idea has been around. I would love to to send my DNA off to be analyzed, perhaps known only by a number, and protected from any sort of discrimination. Until there is more interest in furthering science than furthering coffers, I doubt much can be done that will have any lasting impact.

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