[GRG] Editorial: Create an “Internet of Genes” in the Cloud

To Members and Friends of the Los Angeles Gerontology Research
Group:A Stanford
University Professor of Medicine, Dr. Rajaie Batniji, has proposed to
implement an “Internet of Human Genes” in “The Cloud”
[1],
something that I proposed in significant detail (with HIPAA compliance)
to CIRM some nine months ago, but I still don’t know whether my grant

proposal will be funded for implementation at UCLA or elsewhere. — Steve
Coles

“Op-Ed: Building the Internet of Genes:

Crowd-Sourcing
Genetic Data Could Help Unravel the Causes of
Disease”
by
Rajaie Batniji, M.D. 
Wendell Sherman-Strand, 2 yo, was born with a condition doctors cannot
identify which has left him with little muscle
tone and the inability to walk or talk. Doctors are having his full
genome sequenced to try to determine the cause.
(Renee Jones Schneider/MCT/June 12, 2013)
 
The specter of human cloning
June 30, 2013; (LA Times) — Earlier this month, researchers and
advocates from 40 countries formed a
global
alliance to enable the secure sharing of genomic and clinical data,
aiming to end the era in which only the people who collected your genetic
data had access to it. Efforts to collect and organize massive amounts of
genetic data have up to now been led by the British government, Kaiser
Permanente, the U.S. Department of Veterans Affairs and by private
companies. But with the new global alliance, it seems likely that genetic
data collected by your doctor will one day be made widely available in
the cloud, for researchers around the world to analyze. This has
tremendous potential for science and medicine.Putting
genetic data on-line, however, also comes with serious, and not entirely
known, risks. We know people can sometimes be

identified even from anonymous genetic data, and that could lead to
genes being used to deny employment or insurance coverage. Perhaps most
ominously, if mismanaged, DNA sequences could be used to

create bio-weapons, frame crime suspects, or discriminate against
people in unforeseen ways. The sharing of genetic information will
require a delicate and complex balance between broad access and tight
privacy, a balance the Internet has never perfected.

VIDEO: Presidential panel urges gene privacy protectionYet,
crowd-sourcing genetic data and sharing it freely on-line could lead to
incredible discoveries. It could help scientists unravel the complex
genetic causes of disease and focus on early prevention. It could help
democratize research, allowing researchers equal access to data that can
help answer questions that matter to them.There are
also untold changes that could come to personalized medicine and public
health. With your DNA in the Internet cloud, you could open an app to
give your doctor permission to run a program on your DNA sequence, which
could then help her decide which blood pressure medication is best for
you. With gene sequencing, it will become far easier to trace a disease
outbreak to its source (as was recently

demonstrated in a tuberculosis outbreak), enabling public health
officials to stop outbreaks earlier.Achieving
these advances in science, medicine and public health demand that we
create the “Internet of Genes.” Genomics has been remarkably
absent from the information revolution. This is a surprise, because
unlike a photo, which you can appreciate individually, extracting maximum
value from your genome requires relating it to other peoples’
genomes.As the new
global alliance has noted, the greatest challenge to our advancement of
genomics and personalized medicine is our inability to bring together
data from all over the world. With the exception of about
1,100 people who volunteered to
make their whole gene sequences publicly available, complete genetic
information is not accessible for wide use on the Internet. Instead,
researchers, clinical laboratories, and pharmaceutical companies are
sitting on PetaBytes (PB) of underutilized yet invaluable genetic data.
Genetic studies remain small in size, despite the plummeting costs of
sequencing.  Data -­ paid for by taxpayers and insurance companies
-­ sit mutely in laboratories around the world, used for a single study
or clinical case and then discarded or archived.The
recently announced Global Alliance will begin to lay the
foundation for breaking down these silos that render valuable data
inert.Pressure
to keep this data in largely impenetrable silos comes from many places.
There is the professor who wants to be the first to publish, the company
that wants exclusive data for drug or algorithm development, the hospital
worried about breaches in data privacy, and governments that cannot
legally release data on behalf of citizens. Individuals have legitimate
concerns about being identified by their genetic information and making
public their disease risks.Building
the Internet of Genes demands that we strike a delicate balance between
broad access and tight privacy for genetic data. Our efforts with
“open data” platforms have

failed thus far to allow individuals to actually own their
data.We cannot
replicate these errors in genomics without potentially devastating
consequences. Individuals must be in control of their data at all times,
and this will require fine-grained technologies for managing consent, and
innovative platforms that ensure the security of genetic data wherever it
sits. Personal genetic data are far more sensitive than pictures posted
on Facebook and will require tools to ensure that data are adequately
protected and that access is audited. But if the new global alliance to
enable the secure sharing of genomic data succeeds, we will soon be using
the Internet of Genes to get personalized healthcare, identify disease
risks and democratize science.

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About Johnny Adams

My full-time commitment is to slow and ultimately reverse age related functional decline to increase healthy years of life. I’ve been active in this area since the 1970s, steadily building skills and accomplishments. I have a good basic understanding of the science of aging, and have many skills that complement those of scientists so they can focus on science to advance our shared mission. Broad experience Top skills: administration, management, information technology (data and programming), communications, writing, marketing, market research and analysis, public speaking, forging ethical win-win outcomes among stakeholders (i.e. high level "selling"). Knowledge in grant writing, fundraising, finance. Like most skilled professionals, I’m best described as a guy who defines an end point, then figures out how to get there. I enjoy the conception, design, execution and successful completion of a grand plan. Executive Director Gerontology Research Group (GRG). Manages Email discussion forum, web site, meetings and oversees supercentenarian (oldest humans, 110+ years) research. CEO / Executive Director Carl I. Bourhenne Medical Research Foundation (Aging Intervention Foundation), an IRS approved 501(c)(3) nonprofit. http://www.AgingIntervention.org Early contributor to Supercentenarian Research Foundation. Co-Founder Geroscience Healthspan Forum. Active contributor to numerous initiatives to increase healthy years of life. Co-authored book on conventional, practical methods available today to slow the processes of aging – nutrition, exercise, behavior modification and motivation, stress reduction, proper supplementation, damage caused by improper programs, risk reduction and others. Fundamental understanding of, and experience in the genomics of longevity (internship analyzing and curating longevity gene papers). Biological and technical includes information technology, software development and computer programming, bioinformatics and protein informatics, online education, training programs, regulatory, clinical trials software, medical devices (CAT scanners and related), hospital electrical equipment testing program. Interpersonal skills – good communication, honest, well liked, works well in teams or alone. Real world experience collaborating in interdisciplinary teams in fast paced organizations. Uses technology to advance our shared mission. Education: MBA 1985 University of Southern California -- Deans List, Albert Quon Community Service Award (for volunteering with the American Longevity Association and helping an elderly lady every other week), George S. May Scholarship, CA State Fellowship. BA psychology, psychobiology emphasis 1983 California State University Fullerton Physiological courses as well as core courses (developmental, abnormal etc). UCLA Psychobiology 1978, one brief but fast moving and fulfilling quarter. Main interest was the electrochemical basis of consciousness. Also seminars at the NeuroPsychiatric Institute. Other: Ongoing conferences, meetings and continuing education. Aging, computer software and information technology. Some molecular biology, biotech, bio and protein informatics, computer aided drug design, clinical medical devices, electronics, HIPAA, fundraising through the Assoc. of Fundraising Professionals. Previous careers include: Marketing Increasing skill set and successes in virtually all phases, with valuable experience in locating people and companies with the greatest need and interest in a product or service, and sitting across the table with decision makers and working out agreements favorable to all. Information Technology: Management, data analysis and programming in commercial and clinical trials systems, and bioinformatics and protein informatics. As IT Director at Newport Beach, CA based technology organization Success Family of Continuing Education Companies, provided online software solutions for insurance and financial professionals in small to Fortune 500 size companies. We were successful with lean team organization (the slower moving competition was unable to create similar software systems). Medical devices: At Omnimedical in Paramount CA developed and managed quality assurance dept. and training depts. for engineers, physicians and technicians. Designed hospital equipment testing program for hospital services division. In my early 20’s I was a musician, and studied psychology and music. Interned with the intention of becoming a music therapist. These experiences helped develop valuable skills used today to advance our shared mission of creating aging solutions.
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