Stories about: Ethics and policy

Keeping up with marijuana use and its outcomes in kids

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For the first time since 1937, marijuana is legal for recreational use: adults now can legally possess it in Colorado, Washington, Oregon and Alaska, and there are similar ballot initiatives in many states. With laws at least partially legalizing marijuana in 23 states and the District of Columbia, it’s now a big business. A study comparing 2012-2013 with 2001-2002 found that marijuana use had doubled over the 10 year-period. And that was three years ago.

What are the public health consequences of freely available weed — both acute and long-term? Are we making a big mistake here?

Concerned about potential harms to adolescents, Sharon Levy, MD, MPH and Elissa Weitzman, ScD, Msc, of Boston Children’s Hospital’s division of Adolescent/Young Adult Medicine argue for a better, real-time marijuana surveillance system in this week’s JAMA Pediatrics.

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Lung transplant evaluation: How the rules may differ in children

LungsMost adult transplant centers require patients to walk a set distance in under six minutes to remain a good candidate for lung transplant. The thought is that if patients cannot meet this minimal threshold, then their chances of being able to rehabilitate after transplant are diminished. In pediatrics, this is also important. But Dawn Freiberger, RN, MSN, Boston Children’s Hospital’s Lung Transplant coordinator, says there are other factors that have to be considered.

“The walk test is just one piece of the pie,” says Freiberger.

In 2013, Freiberger co-authored a study, Pretransplant six-minute walk test predicts peri- and post-operative outcomes after pediatric lung transplantation, which became the precursor to a multicenter study with the Children’s Hospital of Philadelphia and St. Louis Children’s Hospital. The new study looks at how a child’s pre-transplant physical condition affects post-transplant outcomes.

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The future of pediatric precision medicine: opportunities, barriers

“Precision medicine” looks to be heading down the same path as “big data” and “innovation”: The term is becoming so widely used that it threatens to detract from the real impact it is already having in patients’ lives.

But for children, who are still developing and have the most to gain, precision medicine is more than a bumper sticker. On the micro scale, early genetic testing—perhaps routinely, someday, in newborns—can help guide medical care, targeted therapies and preventive strategies based on a child’s genetic makeup. On a macro scale, big data from the larger population becomes a predictive tool, guiding medical decisions that could be life-altering in a still-malleable child.

“If you can make an early diagnosis, you can amplify the effects of what you do, rather than try to change the highways once they’re built,” said Wendy Chung, MD, PhD, of Columbia University Medical Center during a panel discussion last week at Boston Children’s Hospital’s Global Pediatric Innovation Summit + Awards (#PedInno15).

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NIH funding snapshots: Your tax dollars at work

2014NIHFundingFunding drives biomedical research, and research drives treatment innovation. Access to funds, particularly National Institute of Health (NIH) awards, is critical to move research forward. The 21st Century Cures Act, which passed the U.S. House on July 10, could give the NIH $8.75 billion more in new grants to disperse over the next five years, the largest increase since the Recovery Act of 2009.

How would those funds be used? Can research find a better way to treat patients? Prevent disease? Disseminate advances in medicine?

In 2014, Boston Children’s led the U.S. in NIH awards. Here’s a look at how a few research teams are leveraging NIH funding to improve care for both children and adults.

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Gene therapy to germline editing: Promises, challenges, ethics

A report this April rocked the scientific world: scientists in China reported editing the genomes of human embryos using CRISPR/Cas9 technology. It was a limited success: of 86 embryos injected with CRISPR/Cas9, only 71 survived and only 4 had their target gene successfully edited. The edits didn’t take in every cell, creating a mosaic pattern, and worse, unwanted DNA mutations were introduced.

“Their study should give pause to any practitioner who thinks the technology is ready for testing to eradicate disease genes during [in vitro fertilization],” George Q. Daley, MD, PhD, director of the Stem Cell Transplantation Program at Boston Children’s Hospital, told The New York Times. “This is an unsafe procedure and should not be practiced at this time, and perhaps never.”

As Daley detailed last week in his excellent presentation at Harvard Medical School’s Talks@12 series, the report reignited an ethical debate around tampering with life that’s hummed around genetic and stem cell research for decades. What the Chinese report adds is the theoretical capability of not just changing your genetic makeup, but changing the DNA you pass on to your children.

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Clinicians and social media: Finding the right relationship

doctor_social_media_shutterstock_264246836_260x260I remember the day about 15 years ago when my doctor tentatively gave me his email address, telling me he trusted that I wouldn’t abuse it. (For the record, I’ve used that address maybe five times.)

Fast forward to today, where doctors and nurses are frequently on social media the same as the rest of us, usually behaving well, sometimes not.

What place do social media have in a physician or nurse’s career? And where do the boundaries lie?

Read the full story on Boston Children’s Hospital’s new blog for healthcare providers, Notes.

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Early neglect and deprivation change the body’s stress response systems

Photo: Angela Catlin/Wikimedia Commons
Photo: Angela Catlin/Wikimedia Commons

Severe social and emotional deprivation in early life is written into our biochemical stress responses. That’s the latest learning from the long-running Bucharest Early Intervention Project (BEIP), which began in 2000 and has been tracking severely neglected Romanian children in orphanages. Some of these children were randomly picked to be placed with carefully screened foster care families, and they’ve been compared with those left behind ever since.

While studies in rodents have linked early-life adversity with hyper-reactivity of the sympathetic nervous system and the hypothalamicpituitaryadrenal (HPA) axis, the relationship has been harder to pin down in humans. BEIP’s study, involving almost 140 children around the age of 12, had children perform potentially stressful tasks, including delivering a speech before teachers, receiving social feedback from other children and playing a computer game that malfunctioned partway through.

Unlike the rodents, the institutionalized children had blunted responses in the sympathetic nervous system, which is associated with the “fight or flight” response, and in the HPA axis, which regulates production of the stress hormone cortisol. The researchers note that this dulled physiologic response has been linked to health problems, including chronic fatigue, pain syndrome and auto-immune conditions, as well as aggression and behavioral problems.

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DNA sequencing in newborns: Where do we go from here?

newborn DNA sequencingCan sequencing of newborns’ genomes provide useful medical information beyond what current newborn screening already provides? What results are appropriate to report back to parents? What are the potential risks and harms? How should DNA sequencing information be integrated into patient care?

Four teams from across the country will converge this week (April 8–10) in Kansas City, Mo., to address these questions and share learnings from NIH-funded pilot projects. The four teams, comprising the NIH’s Newborn Sequencing In Genomic medicine and public HealTh (NSIGHT) project, will give updates on their work at the 6th Annual Pediatric Genomics Conference, hosted by Children’s Mercy Kansas City.

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Show me the money: Reimbursement for medical innovations

medical device reimbursementDevice developers tend to focus on the FDA approval process—PMAs and 510(k) clearances—while overlooking another major challenge: getting insurers to cover the device. Before approaching investors, and certainly before doing any studies, keep payers in mind, advises Maren Anderson, president of MDA Consulting, Inc., which specializes in reimbursement planning.

In the old days, doctors prescribed, and insurers paid. Under health care reform, that’s changed, says Anderson.

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What we’ve been reading: Week of March 23, 2015

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Single-Dose Cures for Malaria, Other Diseases (MIT Technology Review)
Pills that deliver a full course of treatment in one swallow could, or “super pills,” could simplify the treatment of diseases such as malaria and potentially produce cost savings that stretch into the $100 billion a year range, according to Bob Langer, PhD, from the Massachusetts Institute of Technology.

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