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 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?
What is personalized medicine?
Genetic testing & personalized medicine, for better or for worse
At-Home Genetic Tests: A Healthy Dose of Skepticism May Be the Best Prescription (Federal Trade Commission fact sheet)
Promotion of Genetic Testing Services Directly to Consumers (The Genetic Alliance)
More ethical dilemmas and policy issues
Equal access to innovations in personalized medicine: A developing world strategy for personalized medicines (Huff Post)
- Are gene patents blocking personalized medicine? (NOVA Next, PBS)
- Mayo Clinic Issued Patent Covering Personalized Psychiatric Medicine Technology Commercialized by AssureRx Health (WSJ)
- Into the mind of Gary Marchant: An ASU law professor explains a Supreme Court case challenging whether genes can be patented
- 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