Written December, 2012
Within the last ten years, the creation of fast, low-cost genetic sequencing has given the public direct access to genome sequencing and analysis, with little or no guidance from physicians or genetic counselors on how to process the 
information. Genetic testing has resulted in huge public health successes (for example, for diseases that can be prevented or helped by early intervention), but also creates a new set of moral, legal, ethical, and policy issues surrounding the use of these tests. If the testing is useful, how do we provide equal access? What are the potential privacy issues and how do we protect this very personal and private information? Which genetic abnormalities warrant some kind of intervention? How do we ensure that the information provided by genome analysis is correct (especially in the case of at-home tests)? Are we headed towards a new era of therapeutic intervention to increase quality of life, or a new era of eugenics?
Basic resources:
What is direct-to-consumer genetic testing?
Personalized medicine: A biological approach to patient treatment (FDA)
What is personalized medicine?
Genetic testing & personalized medicine, for better or for worse
23andMe Aims to Close Genetics Literacy Gap Among Americans in Celebration of DNA Day
At-Home Genetic Tests: A Healthy Dose of Skepticism May Be the Best Prescription (Federal Trade Commission fact sheet)
Buyer Beware of Home DNA Tests
What happened to personalized medicine?
Unhealthy Prognosis for Venture-Backed Diagnostics
The American College of Medical Genetics’ statement on direct-to-consumer genetic testing
Penn Medicine’s New Center for Personalized Diagnostics Unlocks Cancer’s Secrets
Genetics & Public Policy Center issue brief on direct-to-consumer genetic testing.
Promotion of Genetic Testing Services Directly to Consumers (The Genetic Alliance)
Direct-to-Consumer Genetic Testing: A New View
More ethical dilemmas and policy issues
Equal access to innovations in personalized medicine: A developing world strategy for personalized medicines (Huff Post)
Patent issues
- Are gene patents blocking personalized medicine? (NOVA Next, PBS)
Privacy Issues
- Direct-to-Consumer Genetic Testing: A New View
“FEAR: Customers’ private genetic information would be compromised.
REALITY: People are blogging, tweeting, emailing, and facebooking their intimate genetic information with abandon.”
Organizations devoted to the study and development of personalized medicine
Personalized Medicine Coalition
Charles Bronfman Institute for Personalized Medicine
Coriell Personalized Medicine Collaborative
Penn State Institute for Personalized Medicine
Roswell Park Center for Personalized Medicine
Stanford Center for Genomics and Personalized Medicine