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When People Share Their Genomes on Facebook
NGS Leaders
Posted: Tuesday, June 21, 2011 11:14 AM
Joined: 7/30/2015
Posts: 20


Follow-up discussion to the panel webcast... post questions or comments here!
Janine Holley
Posted: Wednesday, June 22, 2011 12:01 PM
Joined: 11/16/2010
Posts: 7


Here are a few questions submitted by the audience yesterday...
 

Q: Why would patients jeopardize health insurance coverage for example by forfeiting privacy rights to genomic information that may later prove to be predictive or prognostic of a late onset disease state?

 

Q: I don't see much benefit in posting my genome sequence and medical data on FB. I would rather post my genome sequence on a system where (a) I will get some analysis of medical relevance for free (e.g. pathogenic variant detection, risk prediction), (b) contribute data to public, not-for-profit research, and maybe also (c) chat on a forum where experts comment on users' genetics results and the analysis methods used. What is really the advantage of a medium like Facebook? Is the input from other Facebook users really useful?

 

Q: Why is the medical community so behind in the use of this information?

 

Q: How about using the same social media for connectivity but deleting personal identifying information for purposes of aggregating data and examining trends?

 


 
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