What ELSI was New? Plenty.
From October 5 to December 8, 2009, the Genomics Law Report featured a series of thirty-six guest commentaries by industry, academic and thought leaders in the fields of genomics and personalized medicine. Entitled What ELSI is New?, the series, which we have organized into an e-book (pdf), asked each contributor to briefly respond to the following question: “What do you believe is the most important ethical, legal or social issue (ELSI) that must be addressed by the fields of genomics and/or personalized medicine?”
For better or worse, that’s where the instructions ended. The invited contributors identified the ELSI of their choice and discussed (or not) their rationale for so selecting as they saw fit. In addition to refraining from substantive editing, we intentionally avoided coordinating commentaries. Although we encouraged independent submissions from a variety of contributors and deprived them of any advance knowledge of what others in the series would say, one of our hopes was that consensus would begin to form around certain key ethical, legal and social issues.
To some degree this occurred. In collecting the series for the convenience of readers who would like to have all of the contributions in one place (pdf), we have ultimately settled on six broad topic headings for the commentaries, which are preceded by Jason Bobe’s call to arms for a new generation of “genomic astronauts.” It’s Mine! focuses on the privacy, ownership and access questions that continue to swirl around genomic information. Personalized Medicine in the Real World is wide-ranging, with commentaries that examine existing societal, scientific and governmental barriers to the implementation of personalized medicine, and several that propose specific solutions designed to eliminate certain of those barriers. In Too Much Information, the commentaries return to data and consider how individuals, clinicians, researchers and, ultimately, society will assimilate the coming deluge of personal genomic information. Back to School features several commentaries that make the case that improved educational models are the key to realizing the potential of genomics and personalized medicine. The commentaries in No _______ Need Apply focus on one of the most oft-discussed risks associated with personal genomic information―genetic discrimination. Finally, our commentators take a look to the future in Testing the Limits?, examining issues of genetic testing, modification and exceptionalism.
Although we have presented the series using these broad headings, as we undertook the task of gathering the commentaries and attempted to identify cross-cutting themes and trends, we came to appreciate even more the value of the series. That is, the commentaries simply do not fit into neat boxes. That was probably to be expected, given the variety and thoughtfulness of our contributors and the breadth and uncertainty that continues to surround the fields of genomics and personalized medicine.
Despite our organizational efforts, each of our contributors could easily have his or her own topic heading. And more than anything else, the diversity of ideas and opinions expressed in What ELSI is New? is its most significant contribution. After all, our other hope for the series was that the broad range of contributors would hold up seemingly familiar issues in new lights and see new connections. They sure did.
Editor, Genomics Law Report