A proposed rule by the Environmental Protection Agency (EPA) that allegedly aims to strengthen transparency in regulatory science suggests that science is broken. It isn’t. We know it works because we can see the life-saving transplant technologies, hurricane forecasts, new medications, pest-resistant crops, and countless other breakthroughs that exist because of science. This discipline isn’t perfect, but it is the best…
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Earlier this year a source sent us a copy of an unpublished manuscript describing the creation of the first gene-edited babies, born last year in China. Today, we are making excerpts of that manuscript public for the first time. Titled “Birth of Twins After Genome Editing for HIV Resistance,” and 4,699 words long, the still unpublished paper was authored by…
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Trump Plan Would Limit Research Used to Protect Public Health

A new proposal from the Trump Administration would prohibit the Environmental Protection Agency (EPA) from using certain types of data to help create public health regulations. Experts say the proposed rule would undermine the science that underpins important government policies that protect health. Under the proposal, the raw data used in epidemiological studies would have to be made public. But…
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The U.S. National Institutes of Health last week released a draft policy that will require all investigators with NIH funding to make their data sets available to colleagues. For the first time, grantees holding any NIH-funded grant—not just those above a $500,000 threshold in direct costs—will need to submit a detailed plan for sharing data, including steps to protect the privacy of…
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Questioning Facebook’s Foray into Preventive Health

A new health care feature from Facebook called “Preventive Health” is aimed at encouraging users to get recommended screenings like mammograms and blood pressure tests, and to focus on other disease-preventing measures like getting a flu shot. But it remains to be seen whether the new feature will help boost health, according to experts. In a November 4, 2019 Mashable…
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In 1994, when CHIP was formed, the dotcom boom was just dawning. iPhones and social media (except for the earliest versions) were more than a decade away. Bill Clinton was president. Isaac Kohane, MD, PhD, had just completed a fellowship in endocrinology at Boston Children’s Hospital under the mentorship of Joseph Majzoub, MD. He wanted to pursue a research project: creating…
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Can Anna Feurer’s genes be used to help 10-year-old Avery Watts? Born with a genetic condition that results in life-threateningly high cholesterol, Watts travels twice a month to a Delaware hospital to have cholesterol filtered from her blood. Feurer, meanwhile, made headlines two years ago when scientists identified a mutation that protects her from heart disease by dramatically lowering levels…
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For much of my time in public service, there were some things government officials did just because they were the right things to do—and that included respecting the research done by government scientists. That respect has faded over recent presidencies. Sharpie-gate may have been its death knell. Our ability to keep the public safe and move the country forward economically rests, in large part,…
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The U.S. Food and Drug Administration (FDA) awarded $15 million in grants to fund 12 new clinical trials over the next four years to foster the development of rare disease treatments. The grants were awarded through the FDA’s Orphan Products Clinical Trials Grants Program that was provided by Congress to specifically encourage the development of treatments for rare diseases. The grants are intended to…
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For every year of absorbing the pounding and repeated head collisions that comes with playing American tackle football, a person’s risk of developing chronic traumatic encephalopathy (CTE), a devastating neurodegenerative disease, increases by 30 percent. And for every 2.6 years of play, the risk of developing CTE doubles. These new findings from an analysis of 266 deceased former amateur and…
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