Genetic Information: Rights and Responsibilities

Genetic Information: Rights and Responsibilities


  • Gene patents
  • Biobanking
  • DNA forensics
  • DTC genetic testing
  • Personalized medicine
  • Genetic privacy/discrimination


Working Session 1- Monday afternoon

Rights and Responsibilities: Finding Common Ground across Emerging Technologies and Campaigns

While the consequences of many emerging biotechnologies are still over the horizon, most of the technologies and practices that we considered in this track are already with us, and have experienced rapid changes in the past year in their capabilities and implementation. With each change, the ethical, legal, and social questions surrounding these innovations become all the more pressing.

Between summer 2011 and summer 2012, we encountered a range of developments, including:   

  • An individual’s sequenced genome can now be stored on a thumb drive, one company promises. 
  • New York’s Governor Cuomo and many other states are pushing to increase the collection of DNA such that even people convicted of misdemeanors are included; many other countries are increasing their use of DNA forensics.
  • The UK Biobank, containing personal samples and genetic data from half a million people, opened for business, and the National Institutes of Health launched its Genetic Testing Registry, both coinciding with the publication of a significant essay in Science that challenged the anonymity of DNA held in such registries.
  • The US Supreme Court ruled in Mayo v. Prometheus against Prometheus’s patent claims, yet the Myriad case remains to be decided, and 23andMe has recently obtained its first patent for “polymorphisms associated with Parkinson’s disease.”   

The list of updates goes on, including both the ethically troubling along with some significant victories.

The rapid pace with which these technologies and practices are coming into being necessitated beginning the “Genetic Information: Rights and Responsibilities” track with some updates from presenters on:

  • Recent technical innovations in (or, sometimes just the hype surrounding) DTC genetic testing, personalized medicine, DNA forensics, and genetic patents.
  • Relevant legislative and judicial changes to the oversight of these technologies.
  • Developing and active campaigns underway regarding genetic privacy and genetic discrimination. 

Following presentations and audience responses, we had a moderated discussion to consider how all of the issues underlying these technologies, and the related campaigns underway, connect and build upon each other. How might the exercise of “connecting the dots” help us get at the root of all of these issues? And, if we are able to think about the bigger picture that connects all of these emerging biotechnologies, how might it translate into comprehensive communications and public outreach efforts or policy proposals? How might a focus on the bigger picture help us shift from being reactive, where we are so often responding to technologies that are already pervasive, and instead become more proactive, such that we might make recommendations to regulatory agencies, in the US and abroad, to help guide their use of genetic information? These questions and many others were considered in an active discussion with presenters and Tarrytown Meeting participants.


Working session 2 - Tuesday afternoon

Genetic Information and the Common Good

This session addressed the tension between “the common good” and “the autonomous individual” that comes up around so many of the technologies and practices included in this track. How do we ensure individual protection against the misuses of genetic information while still advocating for the promotion of human health and genomic sciences? Must individual rights and the common good always be in tension, or might we disrupt their polarization?

With so much power being relegated to individual consumer choice in the realm of biotechnology, how do we work toward safeguards that recognize social context and the common good? What might it mean to prioritize “care” throughout the research process in order to think about the rights and responsibilities of research to the common good? How do different constituencies (bioethicists, scientists, patients) define “care”?

Speaking to many of these complex questions, panelists Laura Foster, Malia Fullerton, Anna Jabloner, and Martine Lappé explored emerging mechanisms – legal, ethical, institutional – to promote the collective decision-making about consumer genetics, personalized medicine, and biomedical research. Then, David Winickoff moderated discussion, first posing questions that will put the panelists in conversation with one another, and next opening it up to hear from others in attendance.

While deliberations of “the common good” can often seem abstract, an overall goal for this session was to articulate some tangible ideas, forms, and mechanisms that utilize the common good, exploring how these might be more frequently implemented in biotechnology research and development.


Working session 3 - Wednesday morning 

While no formal discussion was planned, we invited participants interested in continuing discussion related to the Genetic Information: Rights and Responsibilities track to take advantage of the Terry room at this time to discuss future possibilities for collaboration.