Science Policy For All

Because science policy affects everyone.

Archive for April 2012

Informed Consent in the Genomics Era

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photo credit: Alfred Hermida via photo pin cc

By:  Katia Garcia-Crespo

Rapid progress in genomics research has been fueled by new technologies allowing rapid, low cost whole genome sequencing and has brought the promise of personalized medicine closer than ever before. However, in order for genomic data to be useful it must be linked to a donor’s clinical samples and medical history. Biobanks have become the instrument to achieve this.

Biobanks are defined as “repositories of human biological material and associated data stored for research purposes”; they are found on every continent and have grown substantially in recent years (1). As biobanks expand their archiving of biological materials related to genetic studies, ethical issues concerning the use of these materials will also increase. Although initial consent is required for storing of biological samples for research purposes, biobanks’ usefulness resides in their ability to provide materials to multiple researchers in different studies not specified on initial consent forms. Current regulations don’t provide clear guidance on obtaining informed consent for future research uses such as these.

Two recent court cases highlight the importance of obtaining appropriate consent for the use of stored biological samples. In the first case, 5 families sued the state of Texas over the use of dried blood-spot samples that had been collected for newborn genetic test screening but which had been later used in research. The families claimed that no consent had been obtained for indefinite storage and undisclosed research use. The case was settled out of court and about 5 million stored samples were destroyed (2). In response, the state of Texas passed legislation allowing for the storage of such samples, provided that parents could opt out.

In the second case, Arizona State University agreed to pay $700,000 and return blood samples to members of the Havasupai Indian tribe. Tribe members believed that they had given consent for their samples to be used in diabetes research. They signed broad consent forms, but initial communications with the tribe members only talked about diabetes. The Havasupai DNA was later used in schizophrenia, inbreeding, and evolutionary studies to which the tribe objected. (3).

In both of these cases the affected parties claimed that researchers had not been clear about what they intended to do with the samples collected. In other words, though consent was sought, it was not fully informed consent. It is clear that with greater transparency these cases could have been avoided, but what constitutes adequate informed consent is still a matter of intense debate. Read the rest of this entry »

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April 30, 2012 at 3:32 pm

Science Policy Around the Web – April 26, 2012

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photo credit: Marco Bellucci via photo pin cc

By: Rebecca Cerio

Our weekly linkpost, bringing you interesting and informative links on science policy issues buzzing about the internet.

Misguided Science Policy? – A trio of communications scientists cautions that “town hall”-style methods of gauging public opinion can give a poor picture of the public’s actual views.  (by Andrew R. Binder, Dietram A. Scheufele, and Dominique Brossard via The Scientist online)

Will Dutch Allow “Export” of Controversial Flu Study?  – An interesting addendum to the recent controversy over the H5N1 flu research pathogenicity research:  can a country use export laws to prevent dissemination of scientific material? (by Martin Enserink via Science)

The Science of Why We Don’t Believe in Science – An oldie but a goodie.  Chris Mooney discusses why it’s so difficult to sway someone away from a belief with facts.  (via Mother Jones)  

Have an interesting science policy link to share?  Let us know in the comments!

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April 26, 2012 at 2:06 pm

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Science Policy Around the Web – April 19, 2012

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photo credit: R. Motti via photo pin cc

By:  Rebecca Cerio

Our weekly linkpost, bringing you interesting and informative links on science policy issues buzzing about the internet.

The Ultimate Endpoint – Elie Dolgin points out the particular ethical and social difficulties faced when studying one of the leading causes of death among young Americans:  suicide.  Is our fear of doing harm leading to research paralysis on a deadly problem?  (via Nature)

Shopping Your Science –   A NASA scientist points out some marketing research that can help scientists make their point, including the three types of figures that you can include to make your point stick with your audience.  Be sure to check out the excerpt from the author’s book as well.  (by Marc J. Kuchner via The Scientist online)

Whooping Cough at Epidemic Levels in Washington – “So far in 2012, 640 cases have been reported in 23 counties as of March 31. This compares to 94 cases during this same time period last year, putting Washington on-pace to have the highest number of reported cases in decades.”  Officials are urging all residents, including adults, to verify that they are up-to-date on their vaccines.  With such vaccines available, I can’t help but see this as a science policy issue.  WHY are we seeing a revival of this disease?  (via the Washington State Department of Health)

Have an interesting science policy link to share?  Let us know in the comments!

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April 19, 2012 at 4:38 pm

Science Policy Around the Web – April 13, 2012

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Artist’s conception of a brain cell from an Alzheimer’s disease patient.
Image courtesy of the National Institute on Aging/National Institutes of Health

By: Science Policy for All contributors

Our weekly linkpost, bringing you interesting and informative links on science policy issues buzzing about the internet.

Confusion reigns in Tennessee – Tennessee governor Bill Haslam has declined to veto HR 368, a new bill that  protects teachers from being prevented “from helping students understand, analyze, critique, and review in an objective manner the scientific strengths and scientific weaknesses of existing scientific theories covered in the course being taught.”  The bill was a response to perceived pressure on teachers to not allow debate on “controversial” topics such as evolution.  HR 368 was opposed by scientific societies such as the AAAS, which stated that “implying that there are significant scientific controversies about the overall nature of these concepts when there are not will only confuse students” and that the bill is unnecessary because “[critical] thinking is already inherent in the way science is taught”.  (by Jeffrey Mervis via Science Insider)

Caution needed when curbing overuse of healthcare resources – When, exactly, does healthcare turn into “overuse”?  Researchers at NYU Langone Medical Center have published a study illustrating why simply cutting back in high-use areas is not an efficient solution.  Researchers found that regions with high or low rates of inappropriate imaging also had high or low rates of APPROPRIATE imaging, respectively.   “The investigators dubbed this finding the “Thermostat Model,” and concluded that imaging use appears to be determined strongly by regional practice patterns and affinity for imaging, rather than solely by medical indication.”  (via the NYU Langone Medical Center)

FDA Approves Possible Alzheimer’s Test – On the medical front, after clearing several regulatory hurdles, the US FDA has approved a new test that will allow doctors to rule out Alzheimer’s disease as a cause of patient cognitive problems.  The test reagent, a radioactive dye that binds to the amyloid plaques that often accompany Alzheimer’s disease, allows doctors to see whether such amyloid plaques are present in the brain or not.  The FDA required the test’s owner, Eli Lilly, to prove that trained doctors could consistently read the test and thus that it was reliable and useful.  (by Greg Miller via Science Insider)

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April 13, 2012 at 12:29 pm

Science Policy Around the Web – April 5, 2012

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by Zephyris via GNU Free Documentation License

By: Rebecca Cerio

Our weekly linkpost, bringing you interesting and informative links on science policy issues buzzing about the internet.

Study Says DNA’s Power to Predict Illness Is Limited – Will knowing your entire genome help predict how and if you will get sick? One study using identical twins that attempts to determine the rate at which your genes predict your health says…not really.  The original study by Roberts, et al  is here behind Science Translational Medicine ‘s paywall.  (by Gina Kolata via The New York Times)

Reforming Science –
Two editorials in Infection and Immunity discuss the pressures facing science as a whole…and how to ease them.

“We call for a cultural change in which scientists rediscover what drew them to science in the first place. In the end, it is not the number of high-impact-factor papers, prizes, or grant dollars that matters most, but the joys of discovery and the innumerable contributions both large and small that one makes through contact with other scientists.  […]it is reasonable to ask whether the current scientific culture is allowing science to be as fruitful as it could be, particularly when the present system provides such potent incentives for behaviors that are detrimental to science and scientists.”

The authors focus on problems such as decreased funding, increased administrative burden, and cultural attitudes about cooperation and scientific worth.  Happily, they suggest some concrete steps that can be taken to address these issues and beef up science’s health.  The authors admit, however, that they are suggesting “nothing less than a comprehensive reform of scientific methodology and culture”, which would likely face significant financial, political, and sociological challenges both from scientists and those who fund it.  (Both editorials by Roberto Casadevall and Ferric C. Fang)

Have an interesting science policy link to share?  Let us know in the comments!

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April 5, 2012 at 2:22 pm