http://www.govinfosecurity.com/interviews/genomic-data-exchange-security-challenges-i-2964?rf=2015-10-26-eg&mkt_tok=3RkMMJWWfF9wsRohuarKZKXonjHpfsX%2F7uUqWaOg38431UFwdcjKPmjr1YsBS8p0aPyQAgobGp5I5FEIT7HYRrhpt6cOXA%3D%3D



Genomic Data Exchange: The Security Challenges

New Group to Develop Recommendations on Protecting Sensitive Data

Marianne Kolbasuk McGee
<http://www.govinfosecurity.com/authors/marianne-kolbasuk-mcgee-i-626> (
HealthInfoSec <https://www.twitter.com/HealthInfoSec>) • October 23, 2015




Devin Jopp, CEO of WEDI

*A new group is launching an effort to develop recommendations for how to
protect genomic data that's exchanged, as is called for under President
Obama's precision medicine initiative.*

The Workgroup for Electronic Data Interchange
<http://www.wedi.org/news/press-releases/2015/10/20/wedi-launches-genomic-data-exchange-workgroup>
recently announced the formation of a genomic data exchange subgroup to
tackle the challenge of protecting patients' most sensitive data as it's
accessed, shared, integrated and stored, says Devin Jopp, CEO of WEDI.

Obama's fiscal 2016 budget includes $215 million to fund the precision
medicine initiative, which he announced during his State of the Union
address in January. The initiative is focused on developing treatments,
diagnostics and prevention strategies tailored to a patient's genetic
characteristics; this approach is also often called personalized medicine.
The effort will require the secure exchange of sensitive genomic data to
support research (see *Obama Budget: Health Data Security Impact*
<http://www.healthcareinfosecurity.com/obama-budget-health-data-security-impact-a-7872>
).
Creating a Framework

WEDI could ultimately make recommendations to the Department of Health and
Human Services on standards for keeping genomic information secure as the
federal government fleshes out plans for precision medicine, Jopp notes.
But the group also aims to create "frameworks and industry guidance" for
the healthcare sector regarding secure genomic data exchange, he adds.

"Before new regulations come out, or new regulations are called for,
[WEDI's hope is] we can all get on the same frame, and make sure we are
implementing to the best of our ability a common methodology," he says.

WEDI, a nonprofit coalition of healthcare industry stakeholders focused on
boosting efficient healthcare information exchange, has a long history of
developing recommendations for standards, many of which HHS has ultimately
endorsed. WEDI is an official adviser to HHS as specified under HIPAA.
<http://www.healthcareinfosecurity.com/hipaa-hitech-c-282>

Its new genomic data exchange workgroup emerged from a taskforce that
earlier this year examined challenges related to genomic information
exchange issues, including maintaining the privacy and security of
patients' most sensitive health data. Those findings were outlined in a
recent report on genomic information exchange.
<http://wedi.org/docs/resources/genomics-issue-brief.pdf?sfvrsn=0>

A goal of the new workgroup is to examine challenges involved with securely
incorporating genomic data into the U.S. healthcare system so that
clinicians can eventually make use of this data in diagnosing and treating
patients - as is also outlined in the goals of Obama's precision medicine
initiative.

"While there are some institutions that are doing some great work today
[with genomic information and precision medicine], there is no
infrastructure today to move this data between institutions, providers or
even to the consumer in a standardized way," Jopp says. "We wanted to begin
the dialogue, knowing that [precision medicine] won't be here tomorrow, but
we have to start planning for it as an industry."

In the interview, Jopp also discusses:

   - Privacy <http://www.healthcareinfosecurity.com/privacy-c-151> and
   security difficulties involving genomic data stored in electronic health
   record
   <http://www.healthcareinfosecurity.com/electronic-health-records-c-252>
   systems and by external cloud
   <http://www.healthcareinfosecurity.com/cloud-computing-c-232> storage
   providers;
   - Challenges involving the encryption
   <http://www.healthcareinfosecurity.com/encryption-c-209> of genomic data;
   - The potential role of health information exchange
   <http://www.healthcareinfosecurity.com/hie-c-256> organizations in
   facilitating the sharing of patients' genomic data.

Before becoming WEDI's CEO, Jopp served as chief operating officer for the
SCORE Association, representing small businesses. Prior to that, Jopp was
chief administrative officer at URAC, a healthcare organization accrediting
group.




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