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Vol. LXV, No. 22
October 25, 2013
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‘Unmatched Potential’
Collins Convenes Ad Hoc ACD Meeting to Advance Two Issues Immediately

On the front page...

NIH director Dr. Francis Collins convened an ad hoc teleconference of the advisory committee to the NIH director (ACD) on Sept. 16 to consider findings of the BRAIN Initiative working group and the HeLa genome data access working group.

To Solve an ‘Enormous Mystery’

First on the agenda were Dr. Cornelia “Cori” Bargmann of the Rockefeller University and Dr. William Newsome of Stanford University, cochairs of the ACD working group charged with reviewing the neuroscience landscape to outline the scientific goals of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.

The cochairs presented the working group’s interim report identifying high-priority research areas for NIH funding in fiscal year 2014. Announced last April by President Obama, the initiative that involves NIH—along with two other federal agencies, DARPA and the National Science Foundation and several private sector organizations—will provide “transformative” knowledge to unlock the “enormous mystery” of the brain.

Continued...

ACD member Dr. Cori Bargmann, shown above at an NIH Director’s Lecture on Sept. 9, serves as cochair of the committee’s BRAIN Initiative working group.  

ACD member Dr. Cori Bargmann, shown above at an NIH Director’s Lecture on Sept. 9, serves as cochair of the committee’s BRAIN Initiative working group.

 
Over the past several months, the working group held extensive consultations with the research community; nearly 50 experts participated in the 7 meetings convened across the country to explore the state of the science in different areas.

Following those consultations, the working group recommended nine high-priority neuroscience research areas for NIH funding in FY 2014:

  • Generate a census of cell types
  • Create structural maps of the brain
  • Develop new large-scale recording
    capabilities
  • Develop a suite of tools for circuit
    manipulation
  • Link neuronal activity to behavior
  • Integrate theory, modeling, statistics and computation experimentation
  • Delineate mechanism underlying human imaging technologies
  • Create mechanisms to enable collection of human data
  • Disseminate knowledge and training “We see unmatched potential and excitement” in the BRAIN Initiative, concluded Bargmann.

“We see unmatched potential and excitement” in the BRAIN Initiative, concluded Bargmann.

‘Wonderful Synergy’ to Move Forward

In discussion, ACD members asked several wide-ranging questions:

  • Given that neuroscience is a huge and diverse discipline, how did the working group narrow the scope of its deliberations? The key was to focus on providing a general framework, answered Bargmann. “We took our cues from the President’s announcement and from the charge Dr. Collins gave the working group,” Newsome added.

  • Shown at a June session of the ACD is HeLa working group chair Dr. Renee Jenkins of Howard University.

    Shown at a June session of the ACD is HeLa working group chair Dr. Renee Jenkins of Howard University.

    Photos: Bill Branson

  • Will there be opportunities to collaborate with other brain-mapping efforts, particularly the Human Brain Project by scientists in Europe? “We look forward to interacting with international partners,” Newsome responded. In addition, NIH deputy director for science, outreach and policy Dr. Kathy Hudson, an ex officio working group member, pointed out NIH will invite participation with private sector interests by posting RFIs (requests for information) and offers to attend a meeting of the working group. Also, Collins will call the various groups together, to take advantage of the “wonderful synergy” and avoid duplication of effort.

  • In the current financial climate, what’s the forecast for long-term funding support for the BRAIN Initiative? The nine priorities span more research than NIH can fund with the $40 million available for the effort in fiscal year 2014, Collins acknowledged. If these recommendations are ultimately accepted, he said, NIH will use them to guide initial investments and to move plans forward anticipating, at minimum, 5 years of sustained funding for the initiative and hopes for an even longer-term, 10-year commitment.

The phone meeting, open also to the public, received several comments from non-ACD members. Those remarks, and others sent via email, will be collected and disseminated to ACD members.

The ACD unanimously endorsed the findings of the working group. After Collins thanked the group for its tremendous effort, he said that he had also spent some time reviewing the findings and found them to be very much in line with the goals of the BRAIN Initiative. He agreed to accept the ACD’s recommendations and said it would be “NIH’s job now to translate the [priorities] into research approaches.”

Unique Situation, Unique Solution

Next, the ACD heard a report from the HeLa genome data access working group.

Henrietta Lacks was a 31-year-old woman diagnosed with cervical cancer in 1951; she died that year after undergoing treatment at Johns Hopkins University. Before her death, however, cells from her biopsy were taken and used for research without her knowledge; those cells—known as “HeLa” cells—have proven to be of enormous value to science for the last 62 years and beyond.

Henrietta Lacks was identified as the source of HeLa cells in 1971, even as the cells and data continued to be used in research worldwide decades after her death. Her family has had to deal with unwanted attention and intrusions for decades, explained Hudson, who provided background information on the issue.

In fact, earlier this year, researchers reported they had sequenced—and posted—the whole HeLa genome. Lacks’s family members, made aware of the post and concerned anew—this time for the privacy of their genomic information—asked that the researchers remove the data.

Shown here at the committee’s June meeting, Dr. Peter MacLeish, an ACD member from Morehouse School of Medicine, participated in the teleconference.

Shown here at the committee’s June meeting, Dr. Peter MacLeish, an ACD member from Morehouse School of Medicine, participated in the teleconference.

The problem was multi-faceted, Hudson said, noting the 1,300 gigabases of the HeLa sequence in public databases. “The cells are everywhere and data about the cells are everywhere,” she said. Researchers had not broken any laws, she pointed out—advances in science had preceded consent and privacy policies. However unintentional, sharing the full genome sequence of HeLa cells publicly had resulted in a unique problem.

NIH reached out to the Lacks family to help forge a “solution to advance science, respect the family and catalyze policy,” Hudson noted.

“In my 20 years of working in genomics…this is one of the most unique experiences I have ever had,” Collins said, referring to the complex circumstances involved in the current situation that Henrietta’s living descendants are facing in the era of genomics and the complex history of this cell line.

On Aug. 7, NIH announced an agreement: Researchers would apply to NIH for access to HeLa genome data, adhere to several terms defined by the family and deposit future data into the database of Genotypes and Phenotypes (dbGaP). An ACD working group that included two Lacks family members would review the applications, share their findings with the ACD, which would ultimately make recommendations for access to the NIH director.

During the Sept. 16 teleconference, Howard University’s Dr. Renee Jenkins, ACD member and HeLa working group chair, discussed the six applications received so far: 1 project was approved outright, 3 were conditionally approved once follow-up information had been provided and 2 were pending.

“Henrietta Lacks, and the HeLa cell line that was established from her tumor cells without her knowledge or consent in 1951, have made significant contributions to scientific progress and advances in human health,” concluded Jenkins, in an acknowledgment by the working group. “We are grateful to Henrietta Lacks, now deceased, and to her surviving family members for their contributions to biomedical research.”

‘Part of the Conversation’

Following the HeLa presentation, ACD member Bargmann applauded NIH’s involvement, praising the agreement and inclusion of the Lacks family in sorting out the intricacies as “an important message to send.”

Agreeing, another ACD member asked whether the agreement would help prevent incidents like this.

This was a unique situation, Collins replied, and “we’re wrestling with how to deal with this in the future.”

With two family members officially named among access decision-makers, Jeri Lacks-Whye—who participated in the conference call—said she and her relatives were “just glad to be part of the conversation…and contributing to moving science forward.”

The ACD voted unanimously to accept the working group’s recommendation to approve four applications for access to the HeLa data. Collins thanked the working group and the ACD for quick work in a tight deadline. He said he would consult with staff and make his decision shortly.

The teleconference ran about 2 hours; 14 ACD members joined the call.


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