A Day at the 2013 Genomes, Environments and Traits Conference

In which the question of whether research subjects have any rights to their data is pondered.

The GET (Genomes, Environments and Traits) conference is a confluence of parties interested in the advances being made in human genomes, the measurement of how the environment impacts individuals, and how the two come together to produce traits.  Sponsored by the organizers of the Personal Genome Project (PGP) at Harvard, it is a two-day event whose topics range from the appropriate amount of access that patients should have to their genetics data to the ways that Hollywood can be convinced to portray genomics more accurately.

It also is a yearly meeting place for the participants in the Personal Genome Project (one of whom is your humble narrator), people who have agreed to participate in an “open consent” research model.  Among other things, this means that PGP participants agree to let their cell lines be used for any purposes (research or commercial).  They also acknowledge ahead of time that because their genomes and phenotypic traits are being released publicly, there is a high likelihood that interested parties may be able to identify them from their data.  The long term goal of the PGP is to enroll 100,000 participants and perform whole genome sequencing of their DNA, they currently have nearly 2,300 enrolled participants and have sequenced around 165 genomes.

In addition to meeting and greeting, PGP participants also attend the conference talks, shoulder to shoulder with the researchers. Scientists also take the chance to capture new phenotypic data (such as sense of smell or ability to recognize pictures) from the assembled gene pool.

In the first set of sessions, a major theme was privacy in research data, and when data should be released to individuals, even if it was gathered for research purposes rather than clinical testing.  We also heard from the founders of the Canadian arm of the PGP, and how there is less concern in Canada about genomic privacy, partially because of the nationalized health care system.  Interestingly, Canada is the only member of the G8 that does not have any genetic privacy legislation on the books.

There was also an entertaining roundtable discussion, lead by Robert Krulwich of public radio’s Radiolab, which discussed the degree to which researchers who discover disturbing information about subjects in the course of their research have a responsibility to inform the subjects of the information.

Another theme was the education that doctors are going to need to handle the new influx of genetic data that will hit them as the per-genome cost of sequencing continues to plummet.  Because many genes and variations are poorly understood at best, doctors who have little training in genomic medicine will find themselves ill-equiped to interpret the data of their patients.

In the evening, Steven Pinker, renowned Harvard experimental psychologist, discussed findings from his new book, The Better Angels of Our Nature.  In it, he argues that humans continues to become less violent over time, although he does not believe that the cause is evolutionary, at least in a genetic sense.  Instead, he sees the interactions of individuals and society working together to gradually lessen the desire to use violence as a method of reaching goals.

The second day of the conference will have more of a focus on pioneers in research, scientists who are exploring the bounds of how the genome, epigenome, microbiome and other factors are interacting with each other.

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