Boston Globe reports: Biolab & ebola

Two recent Boston Globe items of note:

Local hospitals prep for ebola

emergencyIn response to the West African outbreak of the deadly Ebola virus, some Boston hospitals are instructing clinical staff to ask patients as soon as they arrive about their travel histories, and reminding doctors and nurses of the symptoms.

But hospital officials say they would be ready to quickly identify the illness and prevent its spread if an infected patient showed up, using protocols and equipment already in place.

Column : Local biolab sits mostly empty as the CDC copes with its own lab safety crisis.

Over a decade of community protests, Boston University has beaten back lawsuits aimed at closing the lab and won City Council backing. Final approvals are still pending from the Boston Public Health Commission and the federal Centers for Disease Control and Prevention.

Its critics, though, have been given fresh ammunition: The CDC confessed earlier this month to sloppy handling of anthrax and avian flu at its laboratories elsewhere, exposing dozens of employees to the deadly bacteria. The mistake was the kind that proponents of the Albany Street lab had called nearly impossible.

“The CDC example is a wake-up call, if you needed a wake-up call,” said David Ozonoff, a Boston University professor and the longtime dean of its department of environmental health who opposes the lab.

In today’s Globe: Stem cells, retractions, cystic fibrosis and lung transplants.

Capture

Two items of note, including one from obit writer Bryan Marquard on a patient who survived Mass General’s first living-donor double-lung transplant  which was “so new that no one could venture odds for long-term survival.Mr. Bean was 20 that July day as he lay on the operating table, helping advance science as much as he hoped to extend his life. He was 38 when he died in Mass. General on April 14, several months after his body began to reject the transplanted lungs and complications set in.”

 

And from Carolyn Y. Johnson’s always solid but hard-to- find science blog. Read it inside the Monday business section. Good luck finding it online.  Here’s some help:

Retracted stem cell papers get public, private scrutiny

Something would turn out to be wrong with both papers. Where these two tales diverge is how these problems have been handled.

In the weeks since the paper describing the acid bath technique was published in the journal Nature, it has been thoroughly — and publicly — picked apart. Several of its Japanese authors have held press conferences. The president of the RIKEN research institution in Tokyo, where many of the authors work, has apologized to the scientific community, prefacing his public remarks with a deep bow. RIKEN has released detailed reports and been specific about what portions of the paper it was investigating and what was found. It publicly accused a young scientist named Haruko Obokata of fraud, a finding she is appealing.

The incident has sparked a national discussion about the state of science in Japan and the need to ensure high standards in order not to lose the world’s trust.

In contrast, the 2012 paper was withdrawn in April without fanfare: a barebones retraction notice posted by the journal Circulation stated an institutional review had found that the paper contains unspecified “compromised” data. No details were provided about what was wrong with the data.

HIV, gone after marrow transplant, returns to Boston’s “Berlin” patients

Update: Health News Review used this story as an example of overuse of the term “cure.” HNR also pointed out how the “cure” got a lot of coverage and the news that it wasn’t a cure did not.

The Globe’s story is behind the paywall. Here is the nut.

Or here

Boston researchers are reporting the return of the HIV virus in two patients who had become virus-free after undergoing bone marrow transplants, dashing hopes of a possible cure that had generated widespread excitement

The story reports that doctors detected the return of the virus in one patient in August. The second patient chose to continue in the study, but in November, doctors found traces of HIV and he went back on his medication

Some background here from Nature Boston. 

More on the meeting where this was reported here.

As pointed out above in HNR, the overuse of the term “cure” often leads to disappointment? Here’s what the Google search looks like:

ssniOr here.

Genetics and autism: One study, one story

Two Boston-linked stories today on the genetics of Autism.

ss sciFrom the Scientist Last year a team of Australian scientists claimed to have developed a genetic test that predicts risk for autism spectrum disorder (ASD) with “72 percent accuracy.”y night at a Boston fundraiser in support of his research into the functioning of brain synapses in autism

The Scientists reports that they said the test  “may provide a tool for screening at birth or during infancy to provide an index of at-risk status.”

But a new study, led by Benjamin Neale from Massachusetts General Hospital, suggests that those claims were overblown. Neale’s team replicated the Australian group’s research in a larger sample, and found that the proposed panel of markers did not accurately predict ASDs.

“The claims in the original manuscript were quite bold. If they were true, it really would have been quite a major advance for the field, with serious ramifications for patients and other risk populations,” said Neale. “I think it’s important to ensure that this kind of work is of the highest quality.”

More here from SciBlogger Emily Willingham. 

And, this from WBUR

BOSTON — For Timmy and Stuart Supple, a pool is one of the best places to be. That’s where their mother thought the boys, who are 8 and 10 years old and severely autistic, would be the most calm and least stressed for a very important introduction.

“We, we, we go see the doctor?” 10-year-old Stuart asked his mother.

His mother, Kate Supple, tells him the man standing in front of him by the pool is the doctor. Dr. Thomas Sudhof has never met the boys, but he wants to see their autism unchecked.

Sudhof isn’t a pediatrician or one of the myriad of therapists trying to get into their world and bring them out. The Stanford University neuroscientist — who this year shared the Nobel Prize in medicine for his decades of study into how brain cells communicate — has been studying Tommy and Stuart’s genes, specifically an alteration in one gene, for five years. The Supples hosted Sudhof Wednesda

From the Scientist Last year a team of Australian scientists claimed to have developed a genetic test that predicts risk for autism spectrum disorder (ASD) with “72 percent accuracy.”y night at a Boston fundraiser in support of his research into the functioning of brain synapses in autism

The Scientists reports that they said the test  “may provide a tool for screening at birth or during infancy to provide an index of at-risk status.”

But a new study, led by Benjamin Neale from Massachusetts General Hospital, suggests that those claims were overblown. Neale’s team replicated the Australian group’s research in a larger sample, and found that the proposed panel of markers did not accurately predict ASDs.

“The claims in the original manuscript were quite bold. If they were true, it really would have been quite a major advance for the field, with serious ramifications for patients and other risk populations,” said Neale. “I think it’s important to ensure that this kind of work is of the highest quality.”

Therapeutic misconception: Reporting on the Cape Cod clinical trial participant

images nihA WBUR host on fundraising duty this morning talked about how NIH has figured out a way around the federal shutdown to get a so-called life-saving treatment to a Cape Cod man in a drug study.

The fact is, if you are in a clinical trial, no one can promise that you are getting a life-saving drug. The purpose of a clinical trial is to prove or disprove that experimental drugs are life saving.

The patient on the Cape is in a study to test whether a drug approved for thyroid cancer  will work on his metastatic bile duct cancer. For him, it’s hope. But it’s research. The “therapeutic misconception” is the notion that clinical trials offer  teatment. In randomized trials, you’re not even guaranteed to get a drug — you might get a placebo.

A researcher from the psychiatry department at UMass Medical puts it this way: “The therapeutic misconception occurs when a research subject fails to appreciate the distinction between the imperatives of clinical research and of ordinary treatment, and therefore inaccurately attributes therapeutic intent to research procedures. The therapeutic misconception is a serious problem for informed consent in clinical research.”

The Globe:

Cape Cod man’s last-chance treatment for cancer…father of three is now unlikely to receive an experimental drug 

.. cabozantinib, a drug approved for thyroid cancer but still experimental to treat other cancers….

expected to be treated in research studies over the next few weeks.

Boston.com via from AP :

NIH director Francis Collins told the Associated Press that each week the shutdown continues, the NIH hospital will have to turn away 200 patients, 30 of them children, seeking to enroll in new studies—often for last-resort treatments after they’ve exhausted all other options.

Just saying.

Don’t have a hot attack: Framingham Heart Study carries on

fhsWhat is up with the Framingham Heart Study? That long-running research project has been tracking the cardiac health of hundreds of local folk for decades.  (The algorithm used to estimate the 10-year risk of heart disease is called the “The Framingham Risk Score.”)

A story and a blog post recently reported woefully about a 40 percent sequester cut to the study’s National Institutes of Health funding.  Neither quoted anyone from NIH.

So, both pieces failed to note that the cut is to the study’s administrative grant from the National Heart Lung and Blood Institute, not its research grants.  According to BU, the study receives an estimated $5.4 million in NIH grants for research. This funding is not impacted by the 40 percent cut.

In other words, the cuts come from the money used to run the program – office staff, data collection and the management of study subjects, not the scientific research projects that fall under the program’s umbrella. The data collected from the locals helps researcher understand the mechanics and, more recently, the genetics of heart disease as it impacts the rest of us.

In total, NIH says it will spend $21 million this year contracts for the FHS study infrastructure – including a study looking for biomarkers for heart disease. In addition to funding the BU research, NIH says its grants cover 17 FHS related studies at eight different organizations and universities. In addition to the Heart Lung and Blood institute, that money comes from five other NIH institutes and centers, including the National Institute on Aging, The National Institute of Diabetes and Digestive and Kidney Diseases and the National Institute of Neurological Disorders and Stroke.

None of this was clear in this first, July 20 story from the Metro West Daily:

The Framingham Heart Study expects to lose $4 million in funding as part of the federal budget cuts known as sequestration, study officials confirmed Friday in a statement. The $4 million cut takes effect Aug. 1 and represents 40 percent of funding it receives from the National Heart, Lung and Blood Institute (NHLBI), a division of the National Institutes of Health, the statement said.

 The story quotes a spokeswoman from Boston University, which is home to the study.

The cut with “result in a reduction in workforce affecting 19 staff from a variety of clinical and administrative areas, as well as reductions in clinic exams and lab operations.”

Then it quotes from a statement about NIH cuts in general from new Sen. Ed Markey:

“Slashing critical federal investment in medical research jeopardizes the health of many Massachusetts residents, while putting at risk tens of thousands of jobs in the commonwealth’s innovation economy and the industries they support,” Markey said. 

Then it quotes from Karen LaChance, a Framingham resident and president of the Friends of the Framingham Heart Study.

“We just hate to see any cut. It delays hopefully finding whatever the magic bullet might be to prevent heart disease.

Then it doesn’t quote anyone from NIH.

In a post on the Metro West Daily story,  WBUR’s CommonHealth blog offers the headline “Famed Framingham Heart Study Faces Deep Cuts From Federal Sequester.”

It was a “Say it isn’t so” moment this morning when I saw this MetroWest Daily News headline: Framingham Heart Study Faces $4 Million Cut. “Heart disease is the country’s number 1 killer, and chances are whatever you do to prevent it or treat it was influenced by the Framingham Heart Study, a venerable epidemiological gem right here in our own Boston suburbia….”

But, you could argue that it ain’t so.

As far as the impact of the cuts, Metro West Daily quote  BU as noting that “This loss of funding will result in a reduction in workforce affecting 19 staff from a variety of clinical and administrative areas, as well as reductions in clinic exams and lab operations.”

BU tells us that approximately 80 people work at the FHS. “The affected staff will see a reduction in hours beginning Aug. 19; if alternative funding sources are not identified, a layoff would occur Nov. 1. “

The FHS site was a little clearer on all this, with note on its home page:

New Information for FHS Participants edited July 20 2013

Q. Is the FHS closing?
A. No. The current Offspring and Omni Group 1 exams are continuing to Oct. 31, 2013. Ancillary studies are continuing as planned. Medical history updates are being collected on the regular schedule. Please respond to calls for FHS participation as usual.

By Wednesday August 1, BU had posted its own story on the BU Today website with the headline: “Framingham Heart Study Carries on, Despite Budget Cuts: 65-year-old core contract loses 40 percent of funding.”

Storify: Coverage of the UMass #Down syndrome/gene silencing study #genetics

BHN Likes Storify but WordPress doesn’t. Click on the picture to go to the full collection of stories on the UMass Down syndrome study.

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