As of May 1, 2013, our first annual poll of Emerging Ethical Dilemmas and Policy Issues in Science and Technology has received 561 votes. Currently, genetic testing and personalized medicine has 59 of those votes.

It's not too late to cast your vote for next month's issue!

DNA

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: 

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

 

 

Personalized medicine, gel

A resource for everyone

An Immense New Power to Heal: The Promise of Personalized Medicine
by Lee Gutkind and Pagan Kennedy

In this accessible work of creative non-fiction, authors Gutkind and Kennedy explore the possibilities of personalized medicine, its background, and offer case studies from both physicians and patients.

"There is no denying that new technology, which has triggered an explosion of scientific information, is ushering in a revolution in medicine. Anyone can spit in a cup, and for a small fee, learn about his or her individual genetic make-up. But how useful is this information, really, to us or to our doctors? What’s more, how much do we truly want to know – and have others know – about our possible destiny? There is more than we can imagine at stake."

Review: Book explores promise, pitfalls of personalized medicine

 

23andMe

23andMe is "a DNA analysis service providing information and tools for individuals to learn about and explore their DNA." For $99, you can buy a Spit Kit that allows you to provide your genetic material to lab technicians who will analyze it for over 200 personalized health & traits.

Sounds fascinating, but ethical dilemmas and policy issues are still swirling around the use (and usefulness) of this data.