The Duke Institute for Genome Sciences & Policy (IGSP) was founded in 2003 as a response to, in the words of its director, Huntington Willard, “the dizzying array of developments that have emerged in the genome sciences.” Willard says genomic understanding “represents a tremendous opportunity to improve the lot of humanity, especially by using genomic information to individualize health care.” Along with the opportunity come challenges in the social, legal, policy, and ethical arenas.
Those challenges underlie a new book by IGSP faculty member Misha Angrist. In Here Is a Human Being: At the Dawn of Personal Genomics, he writes about making his genome, the DNA sequence that he inherited from his parents and that is uniquely his, an open book. He and the other participants in the Personal Genome Project—the initiative of Harvard researcher George Church ’75—have been lauded for their bravery and derided for their elitism.
Angrist writes that DNA sequencing may soon be cheap enough and reliable enough to make personal genomics as pervasive as cell phones, iPods, and LASIK surgery. And perhaps it will be as useful as those technologies. Physicians spend enormous amounts of time and money trying to find the right statin, the right blood thinner, or the right antidepressant for their patients. Genomic understanding may carry the power to streamline that process. But cheap sequencing and widespread sharing of genomic data also will bring with them “unintended consequences”—a phrase that, according to Angrist, suggests a “slippery slope.” He goes on to mention the nightmare scenarios, loss of insurance and loss of privacy among them.
Two stories in this issue scrutinize developments in, and scenarios that might unfold with, the genomics revolution. Angrist’s own journey of self-exploration, he writes, has been basically a speculative intellectual exercise. But it’s beyond speculation that we’ll be developing an ever-sharper picture of our hard-wired selves and that, in many ways, it will be a fraught process.