In this context ‘feasibility’ encompasses several things. First, research participants vary widely with respect to their knowledge and understanding of genetics and genomics. To educate them about experimental findings may be a trivial task in some cases and a monumental one in others. How can a PI be expected to address such a heterogeneous group? Second, since most whole-genome data are thus far ‘meaningless’, why bother? And when they do become meaningful – say, next week – does this obligate the PI to educate the participants all over again? Finally, is it fair to expect scientists to be communicators at all? Even if they have the desire to share their findings with the lay world (a big if), don’t they lack the training?
What I am calling for is not individualized classroom education of participants, but rather, clear and regular written communication in plain language about general findings and, if possible, each participant’s data. Given the uncertain and ephemeral nature of research funding, it is not realistic to expect periodic, individualized updates for an indefinite period akin to direct-to-consumer genomics companies, whose business models can incorporate monthly subscription fees for periodic revision based on new findings in the literature [47
]. The object is not to hold research participants’ hands ad infinitum
, but to maximize openness and transparency. This is in part why Steven Brenner’s idea of a ‘Genome Commons’ is so compelling: it would be open to all and could presumably exist independent of the vagaries of massive public funding [48
]. Could a lay person use it? Perhaps not right out of the box, but couldn’t such a resource reside along a continuum with other genetic databases meant for public consumption such as a genetic testing registry [49
] and SNPedia [12
As noted in previous sections, the citizen science community has already begun to take it upon itself to develop tools for parsing genetic data. In the case of participants in the PGP, true understanding of such data is more likely to occur because of the exam that is required as part of the PGP consent process [50
]. But even if raw data were returned without any sort of barrier or mediation, I would argue that that would be a more responsible act than return of no data, because it would respect participant autonomy and make it possible for the most relevant party to exert control over her own data.
As for whether genetic and genomic scientists should be in the communication business at all, the question is moot: they already are, even if they don’t realize it. We can bemoan the very real public skepticism about evolution [51
] and general deficiencies in science literacy [52
], but those of us who feed at the public trough cannot afford a “failure to communicate” as stated by the character Luke in the film, Cool Hand Luke
. It is incumbent upon academic institutions to train their researchers to explain their findings. And indeed, many in the genetics community insist that they want to engage the public [54
]. Is there ever a more ready-made opportunity than the one in every PI’s own backyard, that is, their cohort of research participants?