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Noodling around the NIH
June 2016
by Jeffrey Bouley  |  Email the author
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In April, National Institutes of Health (NIH) Director Francis Collins went to Capitol Hill to tell a Senate subcommittee that any losses to future funding for the agency could threaten its most promising programs. The U.S. Congress did agree to a fiscal year 2016 boost in the NIH budget of $2 billion, but funding for NIH in fiscal 2017 and beyond is unclear; some in Congress have called for mandatory funding for the agency, while others are clamoring equally hard for discretionary spending.
 
And if there were any cuts?
 
“We would have to cut the number of new and competing grants that we give [substantially], and great ideas that scientists are putting forward would go unsupported,” Collins told the Subcommittee of the Departments of Labor, Health and Human Services, Education, and Related Agencies during a hearing to review the fiscal year 2017 budget request for the NIH. “The momentum that has been started thanks to [congressional] efforts in FY16 would be severely damaged.”
 
Collins said in part, addressing specifics of future funding, that a stable trajectory of adjusting for inflation plus five percent above that “for multiple years in a row would be a wonderful way to support medical research.”
 
With that in mind, here is some other news from—and about—NIH recently:
 
NIH funds new studies on ethical, legal and social impact of genomic information
 
Four new grants from the NIH will support research on the ethical, legal and social questions raised by advances in genomics research and the increasing availability of genomic information. The awards will fund researchers at interdisciplinary centers through the National Human Genome Research Institute’s (NHGRI) Centers of Excellence in Ethical, Legal and Social Implications Research (CEER) program.
 
The projects will examine the use of genomic information in the prevention and treatment of infectious diseases, genomic information privacy, communication about prenatal and newborn genomic testing results and the impact of genomics in American Indian and Alaskan Native communities.
 
“Many ethical and social problems are not solved by experts in a single discipline alone,” said Joy Boyer, senior program analyst in NHGRI’s Ethical, Legal and Social Implications Research Program. “The CEER program brings together experts from often disparate fields who speak different languages and forms centers where they can study issues across disciplines. These grants are diverse and forward-looking, while also relevant to public health and medicine today.”
 
The grants, totaling approximately $15 million over four years (pending available funds), will support the following research projects: Ethical, Legal and Social Issues for Precision Medicine and Infectious Disease at the Johns Hopkins Berman Institute of Bioethics and Johns Hopkins University in Baltimore; Genetic Privacy and Identity in Community Settings at Vanderbilt University School of Medicine in Nashville, Tenn.; Utah Center of Excellence in Ethical, Legal and Social Implications Research at the University of Utah in Salt Lake City; and Center on American Indian and Alaska Native Genomic Research at the University of Oklahoma in Norman
 
NIH creates atlas of human malformation syndromes
 
Researchers with the NHGRI have collaborated with physicians and medical geneticists around the world to create the Atlas of Human Malformation Syndromes in Diverse Populations. Healthcare providers can use the new atlas to diagnose diverse patients with inherited diseases by comparing phenotypes and written descriptions of their symptoms with photos and descriptions of people with the same condition and ancestry. Previously, the only available diagnostic atlas featured photos of patients with northern European ancestry, which often does not represent the characteristics of these diseases in patients from other parts of the world. The free electronic atlas was announced online in Genetics in Medicine.
 
“This atlas is long-overdue and much-needed,” said Dr. Daniel Kastner, NHGRI scientific director. “The impact of such a resource will be immediate and profound for all healthcare providers who are diagnosing and treating birth defects and genetic diseases in people of diverse ancestry.”
 
The first disorders added to the atlas are Down syndrome and 22q11.2 deletion syndrome. When complete, the atlas will consist of photos of physical traits of people with many different inherited diseases around the world, including Asia, the Indian subcontinent, the Middle East, South America and sub-Saharan Africa. In addition to the photos, the atlas will include written descriptions of affected people and will be searchable by phenotype (a person’s traits), syndrome, continental region of residence and genomic/molecular diagnosis.
 
Public Citizen urges NIH to refocus on human study safety
 
Citing reports in May that indicate that the NIH will overhaul the leadership of its world-renowned NIH Clinical Center—the largest inpatient hospital in the world devoted solely to research on patients with rare diseases and deadly disorders—advocacy group Public Citizen focused on what it called “a stunning failure of NIH leadership at the highest levels,” claiming that, “In particular, the report found that the [NIH] has fostered a culture in which protecting patients and human research subjects from risk sometimes takes a back seat to the demands of researchers.”
 
Public Citizen, which is often quite critical of agencies like the NIH and FDA, maintains that, more broadly, “the fact that protecting the rights and welfare of human subjects at the NIH Clinical Center has become subservient to research demands is indicative of a more endemic problem at other major U.S. research centers. Recent history reveals that researchers at leading U.S. medical schools and hospitals conduct unethical human experiments—often funded by NIH—with alarming frequency.”
 
Public Citizen noted that the report authors appropriately recommend strengthening leadership at NIH to address failures in this area, but the advocacy group is strident that more is needed, saying, “Given the breadth of the problem, changing the culture at NIH to one that prioritizes protecting patients and human subjects over the pursuit of science necessitates finding a new NIH director who gives more than lip service to such protections, not simply scapegoating the leadership of the clinical center.”
 
Code: E061630

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