Posted By Prucia Buscell,
Thursday, April 03, 2014
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What is happening in that mysterious space between people who discover they have fine interpersonal chemistry?
Suzanne Dikker, a cognitive neuroscientist at New York University,
hopes dancing holds clues. She is using dance to investigate human
brainwave synchronization and learn how it can happen. "NeuroTango" was hosted recently by the Greater New York City Chapter of the Society for Neuroscience as part of its Brain Awareness Week. It was also an opportunity for Dikker to get pairs of tango dancers to wear EEG headsets to measure their brain waves as they danced and thought about dancing. A Scientist.com story by Eli Chen describes Dikker's experiment.
who were experienced dancing partners danced to music as they usually
would. They then switched partners, so they were dancing with a new
partner or someone less familiar. Next, they stood still with their
original partners and imagined dancing. Dikker projected graphics onto
the walls, showing when dancers' brains were in sync, and not. Other
studies have shown that experienced dancers coordinate their movement
differently from novices, and that both dancing and mentally rehearsing
the dance stimulate similar brain activity.
Dikker said she is using the tango
because the dancers perform fast, intricate movements that require
exceptional coordination and the need to anticipate each other's every
step, sway and twirl. In addition, leaders and followers have different
mental tasks. She also hopes to learn whether the EEG can reliably
measure brain activities of people who are moving. The Scientist story
says Dikker had worked with Marina Abramovic on "Measuring the Magic of Mutual Gaze,"
at the Garage Center for Contemporary Culture in Moscow in 2011. In
that event, designed to examine empathy and nonverbal communication,
Amramovic and volunteers sitting opposite her gazed into each other's
eyes while EEG headsets captured their brain activities. In that case,
the subjects were stationary.
Lawrence Parsons, a cognitive neuroscientist at the University of Sheffield, did a neuroimaging study of dancers in 2008. An article he co-authored for the Scientific American says coordinated dancing may not occur anywhere in the animal kingdom except among humans. "Our
talent for unconscious entrainment lies at the core of dance, a
confluence of movement, rhythm and gestural representation," the article
says. "By far the most synchronized group practice, dance demands a
type of interpersonal coordination in space and time that is almost
nonexistent in other social contexts."
Lewis Hou, a research associate at the University of Edinburgh, is studying what happens in the brains of Scottish folk dancers
as they perform. He praises NeuroTango as excellent science
communication and a good way to engage the public in neuroscience. Hou
will be participating in a science festival this April in Edinburgh where the dance performances will be partnered with scientific explorations.
O body swayed to music, O brightening glance,
How can we know the dancer from the dance?
From "Among School Children" by William Butler Yeats
Posted By Prucia Buscell,
Thursday, March 27, 2014
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conversations create identifiable networks that have structural
differences depending on the topic and the influence of dominant
individuals. The structures are created as participants in the network
choose the people they answer, retweet, and mention in their own
messages, according to the Pew Research Internet Project.
The Pew researchers found six identifiable network structures: divided, unified, fragmented, clustered, and inward and outward hub and spoke structures. The report summary contains explanations and examples of teach type.
who tweet about political topics, for instance, tend to form divided
structures, in the form of two separate and polarized conversational
networks. Participants in these differing networks don't interact with
each other and they rely on very different sources of information. In
many controversial conversations participants in the networks that Pew
identified as liberal or conservative cited very different websites and
distinctly different words and hashtags. People in the liberal groups
generally cited URLs for mainstream news outlets, whereas conservatives
tended to cite URLs for conservative news and commentary websites, the
report says. The report says the finding underscores the partisan nature
of political tweeting and group reliance on different people and
organizations as well as different news sources. It also shows the two
groups usually ignore each other despite intense interest in the same
networks are tight crowds of highly interconnected people often joined
together by professional interests and hobbies. These structures often
show how networked learning communities work and how social media can
foster sharing and mutual support. People who form Twitter groups based
on their interests in brands, products or celebrities, tend to form
fragmented networks because they focus on their interest, but don't
usually connect with each other.
conversations often look like bazaars with many centers of activity,
the report says. For instance, people interested in the disappearance of
Malaysian Airlines flight 307 could follow the news presented in
several languages by several news outlets. Any global story, the report
says, can generate multiple and diverse audiences that illustrate
diverse opinions and perspectives.
networks tend to form a hub and inward spoke structure, in which
participants repeat and comment on the output of well known media
outlets. Participants are often connected to and in conversation with
the hub, not each other. Support networks, such asbusinesses trying to
resolve customer complaints, create a hub and outward spoke structure,
where the hub business sends replies and information to many
media is the new public square, Pew researchers say, and the network
maps formed by Twitter conversations are like aerial photographs that
show size, composition, and network locations that are analogous to
positions of strategic importance in physical landscapes. These
locations can help identify key people who influence social media
conversations. Read the Pew Research Internet Project report for more information, illustrations of the maps, and further sources on network data and visualizations.
Thanks to Buck Lawrimore for pointing out this story.
Posted By Prucia Buscell,
Thursday, March 20, 2014
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Army is making more of its positions gender neutral but women are still
a minority in the rank and file and an even smaller minority in
leadership. The new Women's Mentorship Network at Fort Hood, Texas, is
designed to move the numbers by cultivating capable, resilient female
Heather Gunther, communications officer for the 3d Brigade Combat Team,
First Cavalry Division, sees mentorship as a professional
responsibility. She recognizes the math problem: women make up only 17
percent of all active duty forces, and women are underrepresented in the
brigade combat team of more than 4,500 soldiers. Those numbers will
grow as the Army opens more previously closed positions to women-there
could be more than 10,000 positions newly available to women by early
next year, and as many as 90,000 in five years. Just a year ago, Major
Gunther, a signal officer, could not have served at the Battalion level.
Only a man could be the signal officer in a combat arms unit. The Fort
Hood cavalry division was one of the pilot units for the Women in the
Army research and is now leading the way in gender integration.
you look at that many soldiers, and recognize the relatively few women,
you feel a real professional responsibility," Gunther said. "There are
professional development groups for officers and Fortune 500 companies
have employee engagement groups and networks. We wanted something
powerful for women in the military."
and colleagues started by holding brown bag lunches where people could
come voluntarily, on their own time, to examine issues women face
aspiring to professional growth and leadership. "We had battle buddies
up and down and across the installation asking 'can we come,' and before
we knew it, there were circles of women meeting everywhere, wanting to
expand the conversation to non commissioned officers and junior
enlistees. We talked about mentorship, role models, challenges,
opportunities, and psycho-social supports."
The Army has a long tradition of male mentoring, and many famed leaders were beneficiaries. Just to name a few, Major General Fox Connor, operations officer for the American Expeditionary Force during World War I, mentored Dwight Eisenhower.
While Eisenhower was on his staff, Connor designed a course of study in
which Eisenhower did extensive reading in military history and had
daily practice writing field orders for every aspect of command. General George Marshall, the Army chief of staff when the U.S. entered World War II, mentored Omar Bradley, who eventually presided over the American D-Day landing on the beaches of Normandy.
notes that the Army's senior leadership has cited the need to create
conditions and support that will help develop women leaders. She adds
that some of her own best mentors have been men, and she wants the new
group to empower men to join women in positive, informed discussions. To
be inclusive and transparent, the Womens' Mentoring Network (WMN) is
open to men and civilians as well as Army women. And as Gunther puts it,
the organization has to be "scalable and starfishy." Before coming to
Fort Hood, Gunther had been at the Army's general staff college at Fort Leavenworth. While there, she participated in a 2011 leadership development program with Ori Brafman, the author of The Starfish and the Spider, a book about successful organizations that are decentralized and adaptive. She also met Lisa Kimball, a former Plexus Institute
president, organizational development leader and skilled facilitator,
who has worked with the Army on leadership development. She conferred
with both about the WMN and she and colleagues decided to infuse the new
venture with some of the processes and practices that had inspired
participants in the groups at Fort Leavenworth.
WMN was launched in January, 60 women attended a clinic directed by
Brafman, and since then 19 women have been trained as facilitators who
know how to guide discussions and use such techniques as improv, and
several Liberating Structures
that can quickly identify crucial questions and issues even in a large
group. Each facilitator hosts a one hour session according to her
schedule, so participants can select the session best suited to their
schedules and needs. Facilitators introduce the interactive exercises in
ways designed to engage attendees as both mentors and mentees,
depending on the situation. In that way, participants can develop
relationships, form networks and share resources even when they are
WMN members can bring up a range of issues, Gunther says, including
controversial ones if they wish, facilitators help keep the discussions
focused on professional development and leadership and at the same time
maintain military values of respect, service and trust. While women's
mentorship initiatives have formed at half a dozen Army bases, not all
have generated wide support. One in Georgia that featured the slogan
"divas in boots" and offered advice on household tips and couponing
aroused the ire of military women who complained it was "too much June
Cleaver and too little GI Jane." Gunther doesn't dismiss domestic
concerns. She just wants the women in WMN to maintain the vision of
career development and a support system that will eventually enrich the
Armed Forces with experienced, confident women who are ready to lead
when the opportunity arises.
Posted By Prucia Buscell,
Thursday, March 13, 2014
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Indian Port cities that have enjoyed a long history of ethnic tolerance
even as regions around them succumbed to violence, commerce may have
provided the path to peace.
an assistant professor of political economy at Stanford Graduate School
of Business, who studies conflict among different social and ethnic
groups, looked at the level of violence in medieval port cities in
India, which tended to have greater ethnic diversity than other towns.
He discovered that when differing groups provide each other with
complementary goods and services, their cities are more peaceful.
examined the history of Hindus and Muslims in South Asia, where they
have interacted for more than 1,500 years. The two groups have done a
lot of fighting, but they have also had peace, and Jha wanted to learn
what conditions led to some long periods of tolerance and cooperation.
His research showed that port cities were five times less prone to
Hindu-Muslim riots between 1850 and 1950, and half as prone from 1950 to
1995. In the Gujarat state in India, port cities were 25 percent less
likely than similar inland towns to experience violence in the ethnic
rioting that swept the region in 2002. The medieval port city of Surat in Gujarat was peaceful during that upheaval.
a minority group, or group not native to the area, provided goods or
services that couldn't be duplicated, peaceful coexistence was likely.
In a paper in the American Political Science Review,
Jha wrote that seventeenth century Muslims had something Hindus wanted.
They had transoceanic trade routes, developed through religious
pilgrimages. For millions of Muslims from all over the world, the Hajj, an annual pilgrimage to Mohammed's birthplace in Mecca
in Saudi Arabia, in a time-honored obligation. Jha writes that from the
700s through the 1800s the world's largest textile market was in Mecca
during the Hajj. Ocean trade routes couldn't be stolen or replicated,
Jha writes, so the Muslim dominance in Middle Eastern trade was valuable
to Hindus, and made the two groups less prone to conflict.
also found that institutions and organizations, especially those that
emerged from historic ethnically diverse trade, can help counter
conflict. For example, he writes, the Bhoras were Muslim traders who had
promoted ethnic tolerance and community disaster relief as well as
commerce through a well organized religious hierarchy. See Jha's paper on trade organizations and religious tolerance.
The influence of such organizations is likely to have aided the
historical and present day relatively peaceful coexistence of Muslim and
Hindu in port cities in the Indian Ocean region. See a Stanford news
release here.image credit: ancient city of Surat from freelibrary.com
Posted By Prucia Buscell,
Thursday, March 06, 2014
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bears hibernate through bitter cold winters, they don't eat, drink, or
excrete, their kidneys shut down, their heart rate falls to a few beats a
minute, their oxygen intake and blood flow plunge, and because they're
living off their own mighty stores of fat, their cholesterol skyrockets.
And when they wake up they're fine. They're not suffering from
diabetes, hardening of the arteries or gall stones, and they haven't
lost muscle or bone density.
think the mysteries of bear hibernation may have much to teach us about
human health issues ranging from obesity to kidney disease to organ
preservation and long distance space travel.
a senior scientist at the biotechnology company Amgen calls hibernation
by black bears and grizzly bears an "astonishing feat of evolution." In
a New York Times story
he explains that when bears halt their renal functions during
hibernation, the result is badly scarred kidneys and levels of blood
toxin that would kill a human. Yet full function is restored when the
bear wakes, and scientists find no lasting damage. Before hibernation,
bears eat and drink prodigiously, and quickly gain the weight and fat
they'll need for their long sleep, which can last up to seven months.
During hibernation, Corbit writes, bears become insulin resistant,
making them in effect diabetic. Unlike diabetic humans, however, they
maintain normal blood sugar levels. And again, when they wake up, their
insulin responsiveness is restored.
the top seasonal weight, male black bears can weigh up to 900 pounds
and females can weigh up to 500 pounds.They may lose up to 30 percent of
their body weight during hibernation. See a Nova report and a National Park Service piece on bear hibernation.
naturally and reversibly succumb to diabetes," Corbit writes. "Since we
know when they make this switch, we hope to pinpoint how they do this."
bears scientists have studied don't handle fat the same way humans do.
It doesn't cause tissue inflammation in bears, and Corbit writes that
bears store their excess winter weight harmlessly in fat tissue, rather
in the liver and muscles as humans do. Corbit's research on bears,
supported by his company, is focused on finding innovations in treating
obesity. Hibernation itself is an adaptation to seasonal food shortages,
extreme cold and snow. Millions of years of evolution has produced
genetic adaptations that make fluctuating weight and obesity benign for
bears. Corbit figures maybe scientists can figure out how to do that for
A Science article by Sara Reardon
says the mysteries of bear metabolism during hibernation could give
doctors the ability to slow down the metabolism of accident victims,
thereby extending the time when treatment is most effective. Findings
could also help extend the preservation of organs for donation.
Understanding how bear brains continue to function with low oxygen, and
the mechanisms by which sleeping bears conserve their muscle and bone
mass during months of inactivity could be useful in managing long term
Posted By Prucia Buscell,
Thursday, February 27, 2014
Updated: Wednesday, February 26, 2014
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engineers were so successful in creating a silent automotive interior
that customers complained. They missed engine roar and road noise. So
BMW spent hundreds of thousands of dollars to develop an audio algorithm
to generate engine noises to be played through the car's stereo system.
BMW claimed its system accurately replicated engine sounds over the full range of RPMs, operating conditions and speed.
an associate professor of psychology at Cornell, cites BMW's expensive
reversal of its initial engineering achievement as an example of what
happens when our intuition and our technology are out of sync. In fact,
Pizarro argues that our social and moral intuitions increasingly fail us
as we are confronted with fast-paced changes in science and
technological innovation. In a lecture at Edge.org,
Pizarro describes how subjects in an experiment on trustworthiness
quickly engaged with a robot called Nexi that had very limited facial
features and movements and visible wires. The robot, with its
unmistakable mechanical appearance, had been programmed with nonverbal
cues experimentally associated with trustworthiness.
30 seconds people were actually talking to Nexi as though she were a
human being, in fact saying things that were quite private," Pizarro
said. He added that some participants even thought Nexi was a
technologically advanced talking robot, "when in reality there was a
graduate student behind the curtain, so to speak." Pizarro quoted early
psychological research indicating our social intuitions build in
intentionality and agency, even when they're not there. During a discussion after the lecture, economist Sendhil Mullainathan, recalled stories in Everett Rogers' book Diffusion of Innovation,
describing how people adopt new technologies in ways that are congruent
with older intuitions. When Indian farmers started using tractors, for
example, they went to the tractor every night and put a blanket over it.
want to kick the vending machine that doesn't deliver the candy bar and
bellow at the computer when Windows delivers the blue screen of death.
We feel bad if a computer game stops playing with us. When we get those
pop-up ads based on an earlier purchase or search, we get a creepy
feeling that someone has been watching us and reading our email. And
that's even when we know about algorithms that generate personalized
don't have intuitions for algorithms," Pizarro said. "As technology
advances, there is no way in which we can rapidly generate new
intuitions. So...when we hear about self-driving cars, we get nervous,
even though we're certain that percentage-wise this would reduce the
number of traffic accidents. It just doesn't feel right." Pizarro fears
some new technologies may be stifled by old intuitions that have
evolved from earlier eras. We could end up making erroneous moral
judgments about technological advances with the potential to cure
diseases and improve lives. By the way, a Car and Driver story by K.W. Colwell explains BMW is not the only auto manufacturer to pipe fake sounds to the drivers.
believes we have yet to define what constitutes an error in judgment in
many areas of emerging technology. For instance, he asks, does the
impersonal nature of drones and robots in war constitute an immoral
action? Is the problem the lack of human agency? How does one figure out
acts of omission vs. acts of commission when technical tools are
What about genetically modified humans? The New York Times
reports that with mitrochondrial manipulation technology, the nuclear
material can be removed from an egg or an embryo of a woman who has an
inheritable mitrochondrial disease and inserted into the healthy egg or
embryo of a donor whose own nuclear material has been discarded. The
resulting child would have the genetic material of three people. The federal Food and Drug Administration is considering the issue.
Posted By Prucia Buscell,
Thursday, February 20, 2014
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Invading armies, the slave trade, merchant travel on the Silk Road, the
flight of refugees and the rise and fall of ancient empires have left
indelible traces in the lives of people today. Geneticists using new
statistical techniques to unravel the surprising results of the
world-wide mixing of human populations over the last 4,000 years have
created a human genetic atlas published in the journal Science.
Genes tell stories of humanity's past. The Kalash people
of Pakistan today have bits of DNA from an ancient European population.
The Kalash and several other groups in the region are the likely
descendants of soldiers of Alexander the Great, who invaded India in 326 BCE. The Arab slave trade
is the likely source of segments of African origin in the genomes of
people who live today in the southern Mediterranean and parts of the
Middle East. That trade began in the seventh century, and many slaves
were absorbed into host populations. European ancestral genes were
probably brought to the Tu people of central China between the eleventh and fourteenth centuries by traders traveling the Silk Road. Scientists say the rise of the Mongol Empire
and the invasion of Mongol hoards conquering new territories is one of
history's most wide-spread population mixing events. Alterations in the
human genome have emerged through centuries of the chaotic events we
A team of scientists led by Simon Myers of Oxford University, Garrett Hellenthal of University College of London, and Daniel Falush
of the Max Planck Institute for Evolutionary Anthropology in Germany
sampled genomes round the world and discovered they could identify 95
While all humans have the same set of genes, a New York Times story by Nicholas Wade
explains, our genomes are "studded with mutations, which are
differences in the sequence of DNA units in the genome." Whole sets of
mutations are passed from parent to child, so certain patterns become
common in certain populations. When people from different populations
marry, their children's genomes have big chunks of DNA from each
parent's ancestry. The size of the chunks decreases with each successive
generation, as the DNA of the parents' genome is swapped during the
chemistry of reproduction. Geneticists looking at the size of the
different chunks can calculate how many generations have passed since
the introduction a new mutation. That allows them to identify an
approximate date when the populations mixed.
The European colonization of America is recorded in the genomes of the Maya and Pima Indians, the story says, and the genomes of Cambodian populations record the invasion Tai people and the fall of the Khmer Empire
in the fifteenth century. The English are known to have a rich history
of ancestral invaders, but because they were genetically similar to the
English, scientists have not yet been able to identify specific mixing
events. While scientists who created the genetic atlas did not work with
historians, they hope their discoveries will be useful in historical
research and discovery. Read the Times story here. Read a Christian Science Monitor story here, an abstract of the Science story here and see an interactive map here.
man is whole encyclopedia of facts. The creation of a thousand forests
is in one acorn, and Egypt, Greece, Rome, Gaul, Britain, America, lie
folded already in the first man. -Ralph Waldo Emerson
Posted By Prucia Buscell,
Thursday, February 13, 2014
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The language of leadership often reflects hierarchy and elaborates distinctions between leaders and followers. The "great man" theory of history proposed by nineteenth century philosopher Thomas Carlisle
still offers an appealing view of extraordinary men and women shaping
and moving events through their own personal strength and charisma.
Scholar and author Mila Baker, PhD,
argues one of the most profound social shifts in recent years has been
erosion of individual power and the rise of collective power enabled by
technology and social media.
need a mindset and language of leadership that maintains equilibrium
between leading and following-a conception of leadership that is agile
and stateless in its composition," she writes in her new book Peer to Peer Leadership: Why the Network is the Leader.
"Like the U.S. Constitution guides and influences the nation's
trajectory without stifling the rights and freedoms of its populace,
organizations' design needs to facilitate leading and following on an
Baker isn't saying CEOs have no role. She is saying today's changing
business world requires them to adopt new thinking and behavior. In the
architecture of a peer to peer network
community, every computer-or electronic device-represents a node. The
network connects people and provides instant flow of information. All
nodes within the network are equal participants in a larger whole, a
concept Dr. Baker calls equipotency. Electronic technology is no longer
just a tool in organizations. It changes the way we relate to one
another. It enables information to be sent and received among peers
working toward a common goal. Everyone leads and everyone follows. Dr.
Baker tells of her own experience working in a psychiatric emergency room.
Each individual had an equal opportunity to contribute, which was not
defined by an individuals' role or position, but the need of the moment.
"We shared power and authority-we followed and gave orders as
necessary," she writes, all respecting each other's commitment to the
wellbeing of patients. "In general, she says, "equipotency blurs the
line between leader and follower, and at the same time clarifies the
overall purpose within groups and organizations."
dynamic action needed to respond to a situation, she says, "occurs at
the intersection of art and science." That's the relational dynamic that
develops within a network when all perspectives are heard, integrated
and accounted for. The network becomes the leader, Dr. Baker writes,
because actions are based on a consensus of needs.
what is the paradigm for new leadership? Dr. Baker says leadership can
only be demonstrated in the context of a relational dynamic. She
describes leadership as a "dyad exchange structure." She says this kind
of leadership is shown by "the catalytic action that occurs in the
relational dynamic between two individuals working together toward a
common goal." In organizations that have successfully evolved away from
the Industrial Age individual-centered command and control model, dyad
exchange structures will connect nodes-people-for the purpose of
resolving polarities and innovating. Dr. Baker says these structures
will strengthen the bonds among people, enable the network to do its
work, and allow us to embrace technology "as an extension of our
capacity to evolve as humans in a connected world." The connected world
means we need to move beyond the idea that leadership is limited to
individuals, and that information should flow mainly from boss to
subordinate. Networked information in organizations means more openness
and more agility. Hazards associated with increased openness can be
mitigated by technology that quickly uncovers patterns and identifies
Posted By Prucia Buscell,
Thursday, February 06, 2014
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We humans have more in common with fruit flies
than we might realize, and that's why research on these tiny insects
can yield valuable clues about human genetics, illnesses and a wide
range of social interactions. Researchers have even found that jilted
male fruit flies turn to drink.
Scientists at the University of California, San Francisco (UCSF) discovered that when male fruit flies are rejected by female fruit flies they are driven to excessive alcohol consumption
and will drink far more than their sexually satisfied peers. They also
discovered that a tiny molecule in the fly's brain, called neuropeptide F, governs this behavior. Neuropeptides
are a highly diverse class of signal molecules in the brain. The UCSF
experiments showed that rejected male lies, whose brain levels of
neuropeptide F were lowered, sought alternative rewards by drinking to
intoxication when given access to alcoholic and non-alcoholic liquids.
Successfully mated male flies, who had higher levels of neuropepetide F
in their brains, were less likely to choose the intoxicant.
Ulrike Heberlein, who led the UCSF research and who is now scientific program director at the Janelia Farm
research campus of the Howard Hughes Medical Institute has noted the
research found a connection between the flies and mammals for a social
behavior influenced by brain chemistry. It turns out that a similar
human molecule, neuropeptide Y, may also be associated with social triggers that drive people to abuse alcohol and drugs.
Now scientists studying fruit flies are learning more about the brain activity that underlies male aggression. A New York Times story by James Gorman describes research by David J. Anderson,
a California Institute of Technology neuroscientist who is running what
the story calls a fruit fly fight club. He and colleague are studying
the role of the neuropeptide tachykinin
in male aggression. When neurons that produce tachykinin are silenced,
researchers were able to decrease aggression in the files. The emergence
of tachykinin is very interesting, the story says, because mammals have
several different kinds of tachykinin, some of which have been
associated with aggression in rodents and may have a variety of roles in
human brain function. While the implications for humans is unclear, Dr.
Anderson told The Times that "studying aggression in fruit flies can actually teach us something about some of the molecules that control aggression."
Researchers have known for some time that humans and Drosophila fruit flies have many of the same genes
and use them in the same way. Many known human diseases have
recognizable matches in the genetic code of the fruit fly. A University
of Glasgow scientist studying kidney stones produced kidney stones in fruit flies-and
noted that unlike humans, the flies didn't seem pained by them. Other
researchers have noted that genes and pathways that regulate fruit fly life spans seem closely parallel to the genes that underlie human longevity.
The poet William Blake had all life, even tiny insects, in mind when he wrote "The Fly" in his Songs of Experience,
His poem, in part, "Am I not/A fly like thee?/ Or art not thou/ A man
like me?/For I dance,/ And drink, and sing,/ Till some blind hand/ Shall
brush my wing."
Read The New York Times story here. A UCSF news story
explains how scientists discovered the link between fruit fly sex,
their altered brain chemistry, and links to a propensity for
Posted By Prucia Buscell,
Monday, February 03, 2014
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Dr. Jimmy Lin has never
forgotten one little boy he saw when he began his medical training in
pediatrics at Johns Hopkins. The child was 5, developmentally delayed
and suffering from inexplicable bouts of agonizing pain. His parents had
taken him to top doctors all over the country. Despite test after test,
none of them could identify what was wrong. The image of the parents
pushing their son's wheelchair down the hall as they walked away remains
burned into his memory.
"It was heartbreaking," he recalled, wondering where that family would go next. Dr. Lin
had been doing cancer research, and he still does, but he was haunted
by families struggling with so many other diseases no one was working
on. With all the extraordinary medical advances, resources and
sophisticated technology available today, he thought, there has to be a
way to help such families. That personal perspective and the recognition
of a gaping unmet need led Dr. Lin, a physician, computational
geneticist and former faculty member at Washington University in St.
Louis, to found the Rare Genomics Institute. It's an unusual organization he hopes will be a catalyst for treatments and cures of rare diseases, and it may also inspire new business models in the life sciences.
Dr. Lin says there are
7,000 rare diseases afflicting some 30 million Americans and 250 million
people world-wide, and many are genetically based. "The ultimate dream
is that we'd like to see cures for all these diseases," he said in a
phone conversation. "The intermediate dream is that we can have research
projects created and study all these rare diseases so they are on a
path to therapy or cure. We don't want to see loving parents trying to
find cures no one is looking for."
The RGI team began with
Dr. Lin's appeal to friends and friends of friends who were interested
in genetic research and excited about seeing it have impact. "We posted
the idea on Facebook,
saying I've got this problem to solve," Dr. Lin said. "A lot of
scientific researchers don't get to see the results of what they are
working on, so this is very attractive to scientists. It appeals to
their humanity. I myself have been amazed at how many people-from all
over the world-have come aboard." See the RGI team here.
Dr. Lin says all the RGI scientists are unpaid volunteers. The
organization itself runs on less than $10,000 a year, he says, but
produces nearly $1 million a year worth of research because so much of
the work is pro bono. See news stories on RGI's work and the children
The cost of DNA
sequencing has dropped dramatically, but is still beyond the means of
most families. Dr. Lin spoke with his friend David Lam, who worked at Razoo,
one of the largest social networking sites for philanthropy, and they
came up with ideas to help patients crowdsource funding for their own
genetic research. Volunteers at a consortium of 18 universities analyze
RGI patients' DNA looking for abnormalities that potentially cause their
disorders. As reported by TED, Dr. Lin tells the story of Maya,
a 4-year-old with severe developmental delays. Within six hours of a
posting on the RGI site, people from all over the country had
contributed small amounts adding up to $3,500, the cost of sequencing
Maya's genome and those of her parents. Researchers at Yale then
discovered a previously unknown mutation in a gene active in fetal
development, and it may be the first crowd-sourced genetic discovery.
"People are still working on a treatment for Maya," he told Plexus.
"There are only a handful of cases where there would be an immediate
cure, and those are amazing. The normal process of discovery is to
understand a gene, understand what it does, then figure out if there is a
drug that can treat the problem it causes." That can take lifetimes, he
adds, but discoveries about genes begins the processes that can lead to
"We see ourselves as
jetpacks for parents," he said. "We make it a little easier for them to
connect with the right doctors, to leverage resources." Crowdsourcing
funds fosters the democratization of science, in his view, and RGI
provides a platform where patient communities can fund research for any
disease. Rare diseases are a long tail problem, Dr. Lin says, and that means a bottom up approach with patients and scientists making discoveries is the most workable.
Dr. Lin points out many
diseases, such a muscular dystrophy have been identified as genetic, yet
not all who have those diseases have the genes known to cause them.
More needs to be learned about genes. "We're starting to see more and
more that there's not a one to one match of disease to gene," he says.
"Often you're dealing with a group of diseases, or many gene mutations. A
disease can have a specific label, but many different causes-it may
present as one disease but really be a different disease. We can help
with that if we can see potentially there is another underlying cause."
Read a Salon story, and a story in Forbes. Other news coverage appears in Bloomberg Businessweek and TIME. Join a PlexusCall from 1-2 PM ET February 28 with Dr. Lin and Trish Silber, president of Aliniad Consulting Partners.