Personalized Medicine: Precision versus Privacy (Biotechnology and Society 2016)

Personalized Medicine: Precision versus Privacy (Biotechnology and Society 2016)

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Schematic of personalized medicine. From bayerpharma.com.

Everyone: Personalized Medicine Case Study

Required Reading/Viewing

• The rise of the 'narciss-ome' Carina Dennis Nature March 16 2012.
• Examining His Own Body, Stanford Geneticist Stops Diabetes in Its Tracks Jon Cohen Science Now March 16, 2012.
• Chen R et al. (2012) Personal Omics Profiling Reveals Dynamic Molecular and Medical Phenotypes. Cell 148:1293–1307.

1. Personalized medicine

Extra Links for the Policy Czar

• Salari K, Watkins H, Ashley EA (2012) Personalized medicine: hope or hype? Eur Heart J 33:1564–1570.
  What are currently the most impactful areas of precision/personalized medicine? What are future areas of promise?
• Personalized medicine: Time for one-person trials Nicholas J. Schork Nature April 29, 2015.
• 23AndMe Company Website.
  $99/$199 Personalized genotyping service. What methods do they use? What information do you get? See especially, Warfarin sensitivity FAQ
• Out of regulatory limbo, 23andMe resumes some health tests and hopes to offer more Erika Check Hayden Nature October, 27 2015.
  What adjustments were made to 23AndMe services after it was temporarily shut down by the FDA? Why?

2. Crowd-sourcing medicine

Extra Links for the Policy Czar

• Swan M (2012) Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and the Participatory Biocitizen J Pers Med 2:93–118.
  What is the main emerging model of medicine that the article describes? How can it be practiced? See especially: "3.2 Participatory Health Efforts".
• Rare Genomics Institure - Watch the TEDx video mid-way down the page.
  What is different about this model for science/funding?

3. Privacy and Public Data

Extra Links for the Policy Czar

• Anonymity not guaranteed: Identity of personal genomic DNA revealed by Web search Kevin Jiang Nature Medicine Jan 17, 2013.
• Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y (2013) Identifying personal genomes by surname inference Science 339:321–324.
  Study identifying people from their publicly posted genetic data.
  What problem does this study raise? What are their results?
• Genetic Information Nondiscrimination Act (GINA) of 2008 posted on NIH website.
  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?
• Invisible: Erase and Replace DNA Products - watch the movie.
  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?