The NIH National Children’s Study was launched in 2000 with much fanfare and an important mission: to follow a hundred thousand of American children from birth to age 21 and collect data on the environmental, chemical, physical, and psychosocial factors affecting them, with an eye towards understanding diseases that start in childhood, including autism, diabetes and asthma.
Now, however, the study has been deemed too expensive to continue in the same form—so far, only about 4,000 children have been enrolled, at a cost of a billion dollars. While it makes sense to look into bringing the costs down, one of the NIH’s money-saving strategies is in danger of compromising the study’s statistical usefulness: instead of continuing to recruit children from all over the country, the NIH is proposing working with health maintenance organizations, or HMOs, to gather the remaining data. This move would mean that children in rural areas, which tend not to be served by HMOs, would be excluded, and the mountains of data the study is poised to gather would not be complete. Already, two advisory board members have resigned in protest of this proposed policy.
Given all the time and money have already been invested in the study, these changes are a big deal. To find out more about the National Children’s Study controversy, and learn about what’s happening next, check out Nature News‘ thorough coverage.
Image courtesy of leean_b / flickr
After seven months of deliberation, the US Institute of Medicine has released a report that marks a turning point in the use of chimpanzees, humanity’s closest relative, in medical research. An IOM panel found that chimpanzees were in the vast majority of cases no longer required for disease research and laid out three stringent rules against which all current and future chimp research should be judged. Within two hours, Francis Collins, the head of the National Institutes of Health, announced he had accepted the group’s analysis and would set up a committee to apply the rules to proposed and ongoing research projects funded by the NIH.
What’s the News: With Congress yet to pass a budget, the country is facing a government shutdown unless lawmakers reach an agreement by midnight tonight. In addition to shuttering many government offices, the shutdown would likely cause present serious difficulties for federal government-funded research.
Difficulties Such As…
What would you do if calcium deposits were building up in your blood vessels and making it hard to walk, and your doctors said they couldn’t help because they had no idea what disease you had, or how to treat it? Before 2008 you wouldn’t have had many options, but thanks to the National Institute of Health (NIH) you now have at least one: visit the Undiagnosed Diseases Program–where medical researchers just cracked their very first case.
Located in Bethesda, Maryland, this program takes on the medical cases that stump other hospitals. The program has received over 1700 referrals since it started, and has accepted only 330 of them. The results of their first case were published this week in The New England Journal of Medicine, but it all started with dumbfounded doctors and some confusing x-rays:
In 2009, the program received a referral from a Kentucky doctor for two sisters, Paula Allen and Louise Benge, who suffered from joint pain and showed calcium buildup in their arteries in x-rays…. The images “astounded us,” [program director William] Gahl said. The team obtained DNA samples from the sisters and other family members (three of Allen and Benge’s siblings had the same recessive disease) and scanned the DNA for markers called single nucleotide polymorphisms that the researchers used to narrow the location of the disease gene. By also examining this genetic region in two other families with similar disorders, the researchers were able to pinpoint a mutation in a specific gene, NT5E, which is involved in breaking down calcification in the arteries. [ScienceInsider]
The U.S. Department of Justice has now officially asked Royce Lamberth, the District Court judge who ruled that the Obama administration’s expansion of embryonic stem cell research violated federal law, to suspend the injunction he issued last week that prevents any more funds from going to stem cell projects. The DOJ is also taking the case to the Court of Appeals.
In a 23-page legal filing, Justice Department lawyers said the stay was needed to avoid terminating research projects midstream and negating years of scientific progress toward finding new treatments for devastating illnesses. The department said the ruling would cause irrevocable harm to “millions of extremely sick or injured people” who could benefit from stem-cell research, as well to scientists and taxpayers “who have already spent hundreds of millions of dollars on such research through public funding of projects which will now be forced to shut down and, in many cases, scrapped altogether.” [Wall Street Journal]
Most ongoing projects had been allowed to continue for now, but only if they used National Institutes of Health money to research at their home universities. However, NIH head Francis Collins notes (pdf) the $54 million in projects due for renewal at the end of this month—without a change in the ruling, NIH is forbidden to renew them. Additionally, projects underway on the NIH campus itself have been ordered shut down.
DISCOVER will keep you posted on further updates.
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