"If the information were safeguarded so the MIB (medical information
bureau) couldn't get
hold of it, it might be another matter"

We all know how that goes, don't we?

Kat

Original Message:
-----------------
From: Kendall David Corbett [log in to unmask]
Date: Wed, 30 Aug 2006 11:12:04 -0600
To: [log in to unmask]
Subject: Re: FW: NIH SEEKS INPUT ON PROPOSED REPOSITORY FOR GENETIC
INFORMATION


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
submitted to
[log in to unmask] A town hall meeting is also planned for early December
2006. 
 
The Office of the Director, the central office at NIH, is responsible
for
setting policy for NIH, which includes 27 Institutes and Centers.
This involves planning, managing, and coordinating the programs and
activities
of all NIH components. The Office of the Director also includes program
offices
which are responsible for stimulating specific areas of research
throughout NIH.
Additional information is available at http://www.nih.gov/icd/od/. 

The National Institutes of Health (NIH) -- "The Nation's Medical
Research
Agency" -- includes 27 Institutes and Centers and is a component of the
U.S.
Department of Health and Human Services. It is the primary federal
agency for
conducting and supporting basic, clinical and translational medical
research,
and it investigates the causes, treatments, and cures for both common
and rare
diseases. For more information about NIH and its programs, visit
www.nih.gov.
  
##
 
This NIH News Release is available online at:
http://www.nih.gov/news/pr/aug2006/od-30.htm.

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