Difference between revisions of "Personalized Medicine: Precision versus Privacy (Biotechnology and Society 2016)"

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==== [[Media:Personalized_Medicine_Precision_Versus_Privacy_Pre-Discussion_Questions.pdf| Download Pre-Discussion Questions (PDF)]] ====
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==== [[Media:Personalized_Medicine_Precision_Versus_Privacy_Pre-Discussion_Questions_2016F.docx| Download Pre-Discussion Questions (MS Word)]] ====
  
 
==== [[Media:Policy_Czar_Template.docx | Download Policy Czar Template (MS Word)]] ====
 
==== [[Media:Policy_Czar_Template.docx | Download Policy Czar Template (MS Word)]] ====
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==== Extra Links for the Policy Czar====
 
==== Extra Links for the Policy Czar====
* [https://www.23andme.com/ 23AndMe Company Website]. <br> $99/$199 Personalized genotyping service. What methods do they use? What information do you get?
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* Salari K, Watkins H, Ashley EA (2012) [https://www.ncbi.nlm.nih.gov/pubmed/22659199 Personalized medicine: hope or hype?] ''Eur Heart J'' '''33''':1564–1570.<br> What are currently the most impactful areas of precision/personalized medicine? What are future areas of promise?
* https://www.23andme.com/en-gb/health/Warfarin-Coumadin-Sensitivity/
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* [http://www.nature.com/news/personalized-medicine-time-for-one-person-trials-1.17411 Personalized medicine: Time for one-person trials] Nicholas J. Schork ''Nature'' April 29, 2015.
* [http://www.nature.com/news/personalized-medicine-time-for-one-person-trials-1.17411] Nicholas J. Schork ''Nature'' April 29, 2015.
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* [https://www.23andme.com/ 23AndMe Company Website]. <br> $99/$199 Personalized genotyping service. What methods do they use? What information do you get? See especially, [https://www.23andme.com/en-gb/health/Warfarin-Coumadin-Sensitivity/ Warfarin sensitivity FAQ]
* Salari K, Watkins H, Ashley EA (2012) [https://www.ncbi.nlm.nih.gov/pubmed/22659199 Personalized medicine: hope or hype?] ''Eur Heart J'' '''33''':1564–1570.<br>Article describing several personalized drug treatments.
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* [http://www.nature.com/news/out-of-regulatory-limbo-23andme-resumes-some-health-tests-and-hopes-to-offer-more-1.18641 Out of regulatory limbo, 23andMe resumes some health tests and hopes to offer more] Erika Check Hayden ''Nature'' October, 27 2015.<br> What adjustments were made to 23AndMe services after it was temporarily shut down by the FDA? Why?
  
 
== 2. Crowd-sourcing medicine ==
 
== 2. Crowd-sourcing medicine ==
  
 
==== Extra Links for the Policy Czar====
 
==== Extra Links for the Policy Czar====
* https://www.ncbi.nlm.nih.gov/pubmed/25562203
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* Swan M (2012) [https://www.ncbi.nlm.nih.gov/pubmed/25562203 Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and the Participatory Biocitizen] ''J Pers Med'' '''2''':93–118. <br> What is the main emerging model of medicine that the article describes? How can it be practiced? See especially: "3.2 Participatory Health Efforts".
* http://www.raregenomics.org/
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* [http://www.raregenomics.org/ Rare Genomics Institure] - Watch the TEDx video mid-way down the page.<br>What is different about this model for science/funding?
  
== 3. Privacy of Public Data ==
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== 3. Privacy and Public Data ==
  
 
==== Extra Links for the Policy Czar====
 
==== Extra Links for the Policy Czar====
* http://blogs.nature.com/spoonful/2013/01/anonymity-not-guaranteed-identity-of-personal-genomic-dna-revealed-by-web-search.html
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* [http://blogs.nature.com/spoonful/2013/01/anonymity-not-guaranteed-identity-of-personal-genomic-dna-revealed-by-web-search.html Anonymity not guaranteed: Identity of personal genomic DNA revealed by Web search] Kevin Jiang ''Nature Medicine'' Jan 17, 2013.
* https://www.genome.gov/24519851/
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* Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y (2013)  [https://www.ncbi.nlm.nih.gov/pubmed/23329047 Identifying personal genomes by surname inference] ''Science'' '''339''':321–324.<br>Study identifying people from their publicly posted genetic data.<br> What problem does this study raise? What are their results?
* http://biogenfutur.es/
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* [https://www.genome.gov/24519851/ Genetic Information Nondiscrimination Act (GINA) of 2008] posted on NIH website.<br> Read the "Information for Researchers and Health Care Professionals" fact sheet linked at the top of the page. What is this law designed to prevent?
#Ormond2010 pmid=20434765
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* [http://biogenfutur.es/ Invisible: Erase and Replace DNA Products] - watch the movie.<br>This is more a piece of thought-provoking art than a real product (see the buy link). What are these products for? What issues does the video raise?
// Article discussing issues with using whole-genome data collected from patients.
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#Gymrek2013 pmid=23329047
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// Article describing the identification of anonymous patients from genetic data.
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Latest revision as of 18:47, 17 October 2016

Download Pre-Discussion Questions (MS Word)

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Schematic of personalized medicine. From bayerpharma.com.

Everyone: Personalized Medicine Case Study

Required Reading/Viewing

1. Personalized medicine

Extra Links for the Policy Czar

2. Crowd-sourcing medicine

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3. Privacy and Public Data

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