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Scientists are warning that a new proposal by the Obama administration could stifle medical research and undermine major initiatives being pursued by the White House.
The controversial provision would require researchers to obtain consent from patients to use almost all biospecimens — blood samples, tumor biopsies, and organ tissue — even when those samples do not include information that could be used to identify the patients.
The proposal would be part of the first significant changes to the federal requirements for human research in the United States in 25 years, and patient groups and government officials see it as necessary to protect patient privacy at a time when more and more can be discerned about patients from their genetic profile.
Stories like that of Henrietta Lacks, a black tobacco farmer whose tissue was taken in the 1950s without her permission, have heightened the desire for such safeguards.
But scientists are increasingly lobbying against the proposal, arguing that it could inhibit exactly the kind of effort that Vice President Joe Biden has been championing — the collection of vast quantities of tumor samples and analysis of genetic data to accelerate cancer research.
If the rule went into effect, critics say, and if clinicians didn’t obtain consent when tissues were taken, researchers would have to attempt to belatedly track down patients and seek permission to use the samples.
Read full, original post: Scientists fight Obama plan to require patient consent to use blood, biopsies in research