Personalized medicine

33(This entry was written in 2013. It will be updated in 2016.)

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 DNAinformation. 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: 

Personalized medicine

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

The American Society of Human Genetics’ statement on direct-to-consumer genetic testing in the United States

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

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

Duke Personalized Medicine

Penn State Institute for Personalized Medicine

Roswell Park Center for Personalized Medicine

Stanford Center for Genomics and Personalized Medicine