PHOTO: JODIE JOHNSON/SHUTTERSTOCK
SCIENCE science.org 11 FEBRUARY 2022 • VOL 375 ISSUE 6581 597NEWSI
n 1997, Laura Gould put her 15-month-
old daughter, Maria, down for a nap
and returned to find her unresponsive.
She had died suddenly, with no clues to
explain the tragedy besides a fever the
night before. When her daughter’s body
was sent to the medical examiner’s office, “I
thought they’d call me in an hour and tell
me what happened ... like on TV,” Gould
says. Months later, neither that office nor
independent pathologists had an explana-
tion. “I hated ending it with ‘the autopsy
was inconclusive, go on and live your lifenow,’” she says. “It just didn’t really feel like
that was an option.”
Gould co-founded a nonprofit founda-
tion to support grieving parents, raise re-
search funds, and increase awareness of
sudden unexplained death in childhood
(SUDC), a term used for children older than
12 months. In the United States, roughly
400 deaths fall into this category each year—
about one-quarter as many as are labeled
sudden infant death syndrome (SIDS). Two
recent genetic analyses, one funded in part
by Gould’s SUDC Foundation, now suggest
potential causes for at least a small fraction
of cases: mutations in genes associated with
epilepsy, heart arrhythmias, and neuro-
developmental disorders.“Having this data is important,” says
Marco Hefti, a neuropathologist at the Uni-
versity of Iowa Carver College of Medicine
who was not involved in the new studies.
SUDC is not a single disease, but “a grab bag
of different things—and the more of those
different things you can pull out, the better
for everybody.” Neither study can say with
certainty that a mutation is responsible for a
child’s death. But the findings provide a ba-
sis for animal studies that could reveal how
the genetic changes interfere with vital func-
tions. They might also inform future child
death investigations and potentially even
screening programs to prevent deaths.Research on SUDC has lagged that on the
more common and better known SIDS. Yet,
biologically, SIDS and SUDC “may be part
of a spectrum,” says Ingrid Holm, a medical
geneticist at Boston Children’s Hospital. In
both, death often occurs during sleep, and re-
searchers suspect contributors including un-
detected heart defects, metabolic disorders,
and central nervous system abnormalities.
The children who die are roughly 10 times
more likely than the average child to have a
history of febrile seizures—convulsions that
come with fevers in young children, notes
neurologist Orrin Devinsky of New York Uni-
versity (NYU) Langone Health.
Following a death, medical examiners
routinely take blood or tissue samples andGeneticists find clues to
unexplained child deaths
BIOMEDICINEBy Kelly ServickSequencing mysterious cases yields mutations
linked to seizures and arrhythmias
meeting. Within hours, Lander had sub-
mitted his resignation.
That outcome didn’t surprise physicist
Neal Lane, science adviser to former Presi-
dent Bill Clinton. “He hurt a lot of people,”
he says. “On top of that, he hurt the presi-
dent, which is a mortal sin.”
Although OSTP is a small office with rela-
tively little clout, observers say Lander de-
serves credit for helping advance important
research policies. He has promoted plans
for a new agency to fund high-risk medical
research, the Advanced Research Projects
Agency for Health. And OSTP has been in
the middle of efforts to devise new rules
aimed at curbing improper foreign influ-
ence in U.S.-funded research.
Some believe any damage to such efforts,
including a renewed cancer research “moon-
shot,” will be short-lived. Lander’s “behav-
ior is regrettable, but it doesn’t mean these
programs will grind to a halt,” says Mary
Woolley, president of the biomedical research
advocacy group Research!America. “These
big things don’t depend on a single person.”
“OSTP will get past this,” says Chris Fall,
former head of OSTP’s national security di-
vision and now vice president for applied
science at MITRE Corp. “The only real
source of the [OSTP] director’s authority,”
he notes, is the president. So, “If the presi-
dent wants something done, it’ll happen.”
Still, it’s not clear whether Lander’s re-
placement will be able to replicate his re-
lationship with Biden. The two men have
known each other for decades, and worked
together on issues such as cancer research.
“Given how much attention science and in-
novation are getting these days, [that kind
of relationship] matters,” one lobbyist says.
Observers say one person who might
get the OSTP director’s job, at least on an
interim basis, is marine biologist Jane
Lubchenco, who led the National Oceanic
and Atmospheric Administration under
former President Barack Obama and now
handles climate change issues at OSTP. A
permanent replacement will need Senate
confirmation, and federal rules allow an in-
terim head to serve for some 9 months, so it
may be some time before Biden announces
a nominee.
In the meantime, Lander’s rocky tenure
in the White House demonstrates that a key
part of the OSTP job is “building relation-
ships and coalitions,” the lobbyist says. “At
Broad [Lander] could rule his own king-
dom. But in the White House you have lots
of colleagues who also hold sway ... and his
effectiveness was clearly hampered by how
he treated other White House officials and
his own staff.” jWith reporting by Jocelyn Kaiser and Jeff rey Mervis.