i'd be concerned about the discrimination part of
this. and i do not believe the information would be
safeguarded enought. somehow it would end up in MIB
hands. 

--- Kendall David Corbett <[log in to unmask]> wrote:

> Meir,
> 
> I'm with you; while information of this type could
> be a valuable
> resource for disease prevention, the risks of
> discrimination by the
> insurance industry and others is too high, IMHO.  If
> the information
> were safeguarded so the MIB (medical information
> bureau) couldn't get
> hold of it, it might be another matter
> 
> Kendall 
> 
> An unreasonable man (but my wife says that's
> redundant!)
> 
> The reasonable man adapts himself to the world; the
> unreasonable one
> persists in trying to adapt the world to himself.
> Therefore, all
> progress depends on the unreasonable man.
> 
> -George Bernard Shaw 1856-1950
> 
> -----Original Message-----
> From: Meir Weiss [mailto:[log in to unmask]] 
> Sent: Wednesday, August 30, 2006 9:47 AM
> To: [log in to unmask]
> Subject: [C-PALSY] FW: NIH SEEKS INPUT ON PROPOSED
> REPOSITORY FOR
> GENETIC INFORMATION
> 
>  
> ME SMELLS A SKUNK 
> 
> 
> -----Original Message-----
> From: NIH news releases and news items
> [mailto:[log in to unmask]] On
> Behalf
> Of NIH OLIB (NIH/OD)
> Sent: Wednesday, August 30, 2006 11:44
> To: [log in to unmask]
> Subject: NIH SEEKS INPUT ON PROPOSED REPOSITORY FOR
> GENETIC INFORMATION
> 
> U.S. Department of Health and Human Services
> NATIONAL INSTITUTES OF
> HEALTH NIH
> News NIH Office of the Director (OD)
> http://www.nih.gov/icd/od/
> 
> FOR IMMEDIATE RELEASE: Wednesday, August 30, 2006  
> 
> CONTACT: Bonnie Flock ([log in to unmask]), NIH Press
> Office,
> 301-496-5787  
> 
> NIH SEEKS INPUT ON PROPOSED REPOSITORY FOR GENETIC
> INFORMATION
> 
> The National Institutes of Health (NIH) is seeking
> public input on a
> proposed
> new policy designed to facilitate the research
> community's access to
> data
> resulting from NIH-funded, genome-wide association
> studies. NIH has
> published a
> Request for Information in the Federal Register
> today and will be
> accepting
> public comments until October 31.
> 
> Genome-wide association studies (GWAS) rely on the
> newly available
> research
> tools and technologies to rapidly and
> cost-effectively analyze genetic
> differences between people with specific illnesses,
> such as diabetes or
> heart
> disease, compared to healthy individuals. The
> differences may point to
> genetic
> risk factors for the development or progression of
> disease. Several NIH
> institutes recently launched, or are planning, GWAS
> initiatives with the
> expectation that the results will accelerate the
> development of better
> diagnostic tools and the design of new, safe and
> highly effective
> treatments.
> 
> "I predict that comprehensive, genomics-based health
> care will become
> the norm,
> with individualized preventive medicine and early
> detection of
> illnesses," said
> NIH Director Elias A. Zerhouni, M.D. "The NIH
> policies that give
> researchers
> rapid access to these findings will be an important
> step along that
> path."
> 
> As numerous GWAS programs get underway, NIH seeks to
> harmonize the
> policies by
> which the results will be made available to
> researchers. The proposed
> GWAS
> Policy calls-on NIH-funded GWAS investigators to
> quickly submit genetic
> data
> (genotypes) along with relevant health information
> (phenotypes) about individuals to a centralized NIH
> data repository.
> Data will be submitted in a form that protects the
> privacy and
> confidentiality
> of research participants. The data will be made
> freely available to all
> approved
> researchers to accelerate their studies.
> 
> The draft policy also proposes terms and conditions
> for investigators to
> access
> GWAS data for research purposes. Data will be
> released in a manner that
> preserves the privacy and confidentiality of
> research participants.
> 
> NIH encourages patenting of intellectual property
> that addresses public
> need,
> such as creating new treatments that can be brought
> to the clinic, but
> seeks to
> prevent premature or inappropriate patents that
> impede future research.
> Because
> publication credit is critical to academic
> promotion, the proposed NIH
> policy
> also defines a grace period during which GWAS data
> will be available for
> access,
> but principal investigators submitting the data
> would be the only ones
> allowed
> to publish analyses in scientific journals. The
> policy also asks that
> recipients
> of GWAS data acknowledge the submitting investigator
> in any published
> works.
> 
> "The NIH believes that the various and complex
> interests related to the
> submission of, and access to, GWAS data must be
> discussed with the
> public," said
> Elizabeth G. Nabel, M.D., director of National
> Heart, Lung, and Blood
> Institute
> and head of the NIH-wide team developing the
> policies. "Wide and rapid
> access to
> GWAS data may have implications for participants in
> studies, their
> families and
> communities, investigators, institutions and
> industry."
> 
> Some of the issues on which public consultation will
> be solicited
> include:
> 
> -- Participant privacy concerns
> 
> -- Potential risks and benefits for individual
> participants
> 
> -- Professional recognition for the labor of
> investigators
> 
> -- Intellectual property rights
> 
> -- The development of a centralized NIH data
> repository 
> 
> The NIH is soliciting comments on the proposed
> policy through:
> http://grants.nih.gov/grants/gwas/index.htm.
> Comments can also be
> 
=== message truncated ===


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around 
http://mail.yahoo.com 

-----------------------

To change your mail settings or leave the C-PALSY list, go here:

http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy