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
- Develop a suite of tools for circuit
- 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.
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.
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
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.