Stories about: Ethics and policy

A Manhattan Project for the brain, at age 50

Formation of the IDDRCs in the 1960s launched a Manhattan project for the brain.
Landmark federal legislation in JFK’s final days launched an explosion of neuroscience research. (PHOTO ILLUSTRATION: NANCY FLIESLER/ADOBE STOCK)

On October 30th, 2018, Boston Children’s will be marking the 50th anniversary of the founding of its Intellectual and Developmental Disabilities Research Center.

As the African-American civil rights movement was flowering in the 1960s, a less visible civil rights movement was dawning. And so was a revolution in science that may outshine that spurred by the U.S. space program.

It was a time when children with what is now called intellectual disability (ID) or developmental disability (DD) were “excused” from school and routinely abandoned to institutions. “Schools” like the Fernald Center in Massachusetts and the Willowbrook State School in New York housed thousands of residents.

Some participated in research, but not the kind you might think. At Willowbrook, children were deliberately infected with hepatitis to test a new treatment. At Fernald, they were deliberately exposed to radiation in an experiment approved by the Atomic Energy Commission. Institutional review boards did not then exist.

In 1962, President John F. Kennedy convened a panel to propose a “National Action to Combat Mental Retardation,” at the strong urging of his sister Eunice Kennedy Shriver. Three weeks before JFK’s assassination, the first legislation passed. It changed the course of history.

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When neglected children enter adolescence: A cautionary tale about family separation

child neglect / child deprivation
(ADOBE STOCK)

Many migrant children separated from their parents at the U.S. border, some of them very young, have landed in shelters where they often experience stress, neglect and minimal social and cognitive stimulation. The latest findings of the long-running Bucharest Early Intervention Project (BEIP), involving children in Romanian orphanages, tells a cautionary tale about the psychiatric and social risks of long-term deprivation and separation from parents.

BEIP has shown that children reared in very stark institutional settings, with severe social deprivation and neglect, are at risk for cognitive problems, depression, anxiety, disruptive behavior and attention-deficit hyperactivity disorder. But BEIP has also shown that placing children with quality foster families can mitigate some of these effects, if it’s done early.

The new BEIP study, published this week by JAMA Psychiatry, asked what happens to the mental health of institutionalized children as they transition to adolescence. Outcomes at ages 8, 12 and 16 suggest diverging trajectories between children who remained in institutions versus those randomly chosen for placement with carefully vetted foster families.

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Genomic sequencing for newborns: Are parents receptive?

BabySeqCasie Genetti, MS, CGC is a licensed genetic counselor with the Manton Center for Orphan Disease Research at Boston Children’s Hospital. She is first author of a recently published paper on the BabySeq Project.

The idea of genomic sequencing for every newborn has many in the scientific community buzzing with excitement, while leaving others wary of the ethical and social implications. But what do the parents think? The BabySeq Project has been exploring parental motivations and concerns while assessing their willingness to participate in a pilot newborn sequencing study.

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Coordinated care for children on respiratory support saves money

CAPE program staff serve children who require home respiratory support.
Sofia Wylie, then age 2, is enrolled in the CAPE program and was part of the study. (Courtesy Natalia Wylie)

Children with high-risk, complex conditions — such as those who need ventilators to breathe — often receive disjointed care, scattered among many providers. This leads to emergency room visits and hospitalizations that could have been avoided. And once in the hospital, many children remain longer than they should for lack of good home care.

At home, families face daunting challenges. They must learn to use and maintain their children’s medical equipment and handle emergencies. They often have little or no access to home nursing services. Private insurance rarely covers home nursing for more than a limited number of hours, and Medicaid pays too little to attract qualified nurses. Many parents end up quitting their jobs to provide care.

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If I knew then what I know now: The need for infrastructure to enable precision medicine

precision medicine - closing the infrastructure loop
For precision medicine to happen, we need to be able to close the loop when genetic discoveries are made.

Catherine Brownstein, MPH, PhD, is scientific director of The Manton Center for Orphan Disease Research at Boston Children’s Hospital. Kelsey Graber, MSc, is a research assistant in the Developmental Neuropsychiatry Program. Joseph Gonzalez-Heydrich, MD, is director of the Developmental Neuropsychiatry Program at Boston Children’s Hospital.

Research implicating rare genetic variants in medical and psychiatric diseases is quickly accumulating. This expanding knowledge should be taken into account when making treatment decisions for patients carrying these variants — as well as other family members — even when that knowledge comes after the patient is tested. But all too often, medical institutions are unable to go back and update the information given to families. We need a better infrastructure to enable precision medicine.

This problem recently surfaced in our psychiatry practice. It came to our attention because of a young boy with mild coordination delays and learning disabilities. At age 6, he started experiencing daily hallucinations such as voices telling him to kill his classmates.

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Study: Repeal of the individual mandate could undercut health care for youth under 26

individual mandate
Diagnosis: No insurance coverage

As the U.S. Senate takes up the proposed American Health Care Act (AHCA), a three-state study provides evidence that eliminating the individual mandate could jeopardize young adults’ health care coverage — even with laws allowing people under 26 to be covered under their parents’ plan.

Researchers led by Lauren Wisk, PhD, of the Division of Adolescent and Young Adult Medicine at Boston Children’s Hospital, analyzed insurance data from 131,542 adolescents and young adults whose family was covered by Harvard Pilgrim Health Care between January 2000 and December 2012.

“With an individual mandate, many more young adults used the dependent coverage provision, and people who were previously dropped from their parents’ plan were more likely to get back on,” Wisk reports.

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Marching because science saves lives

Timelapse video: Boston’s March for Science in 120 seconds (Credit: Kat J. McAlpine)

One definition of science: “The field of study concerned with discovering and describing the world around us by observing and experimenting.”

Another, simpler definition: “The state of knowing.”

At Saturday’s March for Science in Boston, people brandished signs defending facts, data, even the act of thinking. But with the National Institutes of Health budget under attack — a potential 18 percent cut — the most compelling signs were those that stated: “Science saves lives.”

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Lack of drug testing in kids exposes them to off-label harm

drug testing in children
Loopholes in current legislation let drug companies defer testing their products in children, so the majority of prescriptions are off-label.

Florence T. Bourgeois MD, MPH, is assistant professor of Pediatrics and Emergency Medicine at Harvard Medical School, faculty in the Computational Health Informatics Program, and Scientific Director of the Biobank for Health Discovery at Boston Children’s Hospital

Every day, more than half of children seen in outpatient clinics are prescribed a medication that is not FDA approved for the child’s age or diagnosis. Such off-label prescribing is widespread across pediatric conditions and treatment settings and as many as 90 percent of pediatricians have knowingly prescribed off-label medications.

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Infant behavior, dyslexia and war orphans: A portrait of Peter Wolff, MD

Peter Wolff MD
Peter Wolff c. 1977 (Ed Fitzgerald/Boston Globe)

Peter Wolff, MD, recently retired from Boston Children’s Hospital after more than 60 years in service to clinical psychiatry, behavioral science research and ethical oversight of human subject research.

When he started as a psychiatrist at Boston Children’s Hospital in 1956, Peter H. Wolff, MD, was seeking a deeper understanding of infant behavior. At a time when psychoanalysis was the framework for understanding the infant psyche, Wolff applied scientific methods used to study animal behavior — carefully observing an animal in its natural environment and seeking to discern patterns. His approach would revolutionize our understanding of infancy.

“We knew a great deal about a stickleback fish, the graylag goose by just watching what they do in the field — field observations — but nobody had ever done that with humans,” Wolff shared in an interview in 2009, “and it seemed to me a logical thing to try to do that.”

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Why we’re glad the Cures Act passed: Its provisions benefit children

Cures Act children
Via @POTUS

Amy Judge DeLong is manager of Federal Government Relations at Boston Children’s Hospital.

In the midst of a seismic shift in Presidential administrations and anticipation of the incoming Congress, a landmark medical research bill with several provisions important to children cleared the lame duck session of Congress. The 21st Century Cures Act (Cures) is the end result of nearly three years of bipartisan Congressional activity. Last week, it was signed into law.

Cures includes scores of provisions aimed at strengthening National Institutes of Health funding for medical research and accelerating review efforts at the Food and Drug Administration. The law cleared Congress with overwhelming majorities, an example of bipartisanship that may be challenged in the months ahead.

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