Re: [sbis_l] no standards for sharing genetic data

Eugênio,

O Instituto HL7 Brasil criou um Working Group de Genoma para dar suporte as iniciativas do WG Clinical Genomics, e está a disposição.

Inclusive, recentemente, na reunião do HL7 em Atlanta, estive com o Amnon Shabo,que é Co-Chair do WG Clinical Genomics e conversamos sobre esta iniciativa.

Conte com o nosso apoio.

Marivan

__________________________________

Marivan Santiago Abrahao, M.D

Presidente - HL7 Brazil

e-mail  : chair@hl7.org.br

website: www.hl7.org.br

Em 10/06/2013, às 15:12, Eugenio Simao <eugenio.simao@gmail.com> escreveu:

Algum instituto no Brasil estará integrando esta iniciativa?

Simão

 

De : owner-clingenomics@lists.hl7.org [mailto:owner-clingenomics@lists.hl7.org] De la part de Ullman-Cullere, Mollie
Envoyé : segunda-feira, 10 de junho de 2013 13:56
À : Grant Wood; Amnon Shabo
Cc : HL7 CG listserv; owner-clingenomics@lists.hl7.org
Objet : RE: no standards for sharing genetic data

 

Looks like this comment is coming from the context of the Global Alliance: Over 70 leading health care, research, and disease advocacy organizations that together involve colleagues in over 40 countries have taken the first steps to form an international alliance dedicated to enabling secure sharing of genomic and clinical data.  (http://www.broadinstitute.org/news/5046-0 )

 

Several of the workgroup members are involved in this through their institutions or other organizations (e.g. Genetic Alliance), and this work is helping to inform the extension of current HL7 standards which support clinical genetics to ones which truly support clinical genomics.  The Clinical Sequencing Domain Analysis Model will contain this as well as future releases of current standards. 

 

That said, we should talk about sending invites to the September HL7 Workgroup meeting in Cambridge.

 

Best regards,

Mollie

 

From: owner-clingenomics@lists.hl7.org [mailto:owner-clingenomics@lists.hl7.org] On Behalf Of Grant Wood
Sent: Monday, June 10, 2013 10:34 AM
To: Amnon Shabo
Cc: HL7 CG listserv; owner-clingenomics@lists.hl7.org
Subject: RE: no standards for sharing genetic data

 

Great idea. We should reach out to David Altshuler and the Broad Institute to schedule something with them as soon as we can.

 

Grant

 

From: owner-clingenomics@lists.hl7.org [mailto:owner-clingenomics@lists.hl7.org] On Behalf Of Amnon Shabo
Sent: Monday, June 10, 2013 3:58 AM
To: Grant Wood
Cc: HL7 CG listserv; owner-clingenomics@lists.hl7.org
Subject: Re: no standards for sharing genetic data

 

Hi Grant, 

Thanks for sharing... how about we invite him to one of our meetings in Cambridge in September? 

Thanks,
Amnon.




From:        Grant Wood <Grant.Wood@imail.org> 
To:        HL7 CG listserv <clingenomics@lists.hl7.org>, 
Date:        10/06/2013 03:15 
Subject:        no standards for sharing genetic data 
Sent by:        owner-clingenomics@lists.hl7.org

---

From a recent article - 
"Currently, there are no universal standards for sharing genetic data while maintaining patient privacy and ensure each patient's consent to sharing their information. "Each institution has its own approach," Altshuler says. 
In January, 50 leading researchers—including Altshuler—from eight countries met to discuss gene research's data-sharing problem. The researchers agreed that there was a need for a global alliance that would standardize data and make it widely available to advance medical knowledge." 
See http://www.advisory.com/Daily-Briefing/2013/06/06/Dozens-of-health-groups-to-create-massive-gene-database 
  
We should reach out to David Altshuler about our work. 
  
  
Grant M. Wood 
Senior IT Strategist 
Intermountain Healthcare Clinical Genetics Institute 
324 10th Avenue, Suite 183 
Salt Lake City, Utah 84103 
grant.wood@imail.org 
intermountainhealthcare.org/genetics 
 

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