Wednesday, September 4, 2013

AHRP- Help Preserve Human Right to Informed Consent

ALLIANCE FOR HUMAN RESEARCH PROTECTION
Advancing Honest and Ethical Medical Research
www.ahrp.org

FYI

If you value your human right to say No to being subjected to a medical experiment in which you--or your loved one--may be exposed to risk of harm--
express your concerns, post your comments for the public record.

ALL oral presentations at the Aug. 28 Public Meeting Related to Protection of Human Subjects and Standard of Care Research are posted on YouTube
in the order in which they were presented:  
http://www.youtube.com/playlist?list=PLrl7E8KABz1Gc_ndt9grGg8O_jE5G1RNC

Parents who described their experience and the experience of their premature children in the SUPPORT oxygen experiment are separately.
Shawn and Kerry Pratt with their daughter, Dagan: http://www.youtube.com/watch?v=n1USAH0PMu0
Sharissa Cook, mother of a son who was a subject of the SUPPORT experiment:  http://www.youtube.com/watch?v=mzLubIgWGP8

The SUPPORT debate brought into focus the collision between the moral values of the public and the values that set extremists among researchers and the leadership of NIH apart. 

56 Written presentations and Comments from the public for the public record:  
http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;dct=SR%252BPS;D=HHS-OPHS-2013-0004


My written presentation on behalf of AHRP : http://www.regulations.gov/#!documentDetail;D=HHS-OPHS-2013-0004-0033
(to be augmented with a fully referenced refutation of misrepresentations made by panelist, Kathy Hudson, Deputy Director for Science Outreach and Policy, NIH.

Comment by AHRP board member, Meryl Nass, MD:  http://www.regulations.gov/#!documentDetail;D=HHS-OPHS-2013-0004-0057

Comments for the public record are accepted until Sept. 9 at 11:59 PM. 

Vera Sharav

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