2012 Panel Discussion - Questions and Answers

Communication and Public Outreach

Has the genome sciences community overstepped the promises made to the public regarding personal genomics and health?
(What is a reasonable expectation the public should have of the impact that genome sciences have on their lives. A REASONABLE expectation - not "10 years from now every baby will have his or her genome sequenced!" I don't think that's reasonable or even on the table, but it's what some of us tout.)

There has been a lot of over-promising. Our science is getting to resemble our politics. Genomics is basic science, not snake oil. There are amazing applications of the science, not all of them anticipated, but there is no smooth path between even the most stunning advances in basic science and practicality. The first laser lased in the early 1960’s. For more than a decade, lasers were thought of as “a solution in search of an application.” Genomics will transform medicine, but not quickly and probably not in the ways we currently anticipate.

Based on your experience interacting with the public, how do you think genome scientists can improve at communicating their goals and research?

Most of my experience is with highly educated audiences. They are fascinated by genomics and responsive to diverse styles of communication, ranging from those that emphasize fundamental ideas to thoughtful assessments of practical successes. Once one wanders beyond the safe confines of academia, the communication challenges escalate. They are not specific to genomics. Science depends on cumulative learning. The problem of how to span large gaps in basic knowledge just increases with time as we constantly build our technologies and ideas about the world on everything that has gone before. Sometimes new knowledge leads to simplification, but more often it adds nuance and complexity to what we already knew. The challenge of communicating contemporary science to general audiences without badly distorting the message needs more attention. I doubt that there are any easy solutions, but there are surely better ones and worse ones. We need to identify and build on the better ones.

Please integrate these questions on the role of scientists and journalists in communicating genomic discoveries.

Personalized medicine would be a good area in which to attempt reform. There has been some success, but the challenges of broadly integrating genomic data into mainstream medicine are daunting. Rather than inflating every claim, scientists and journalists should experiment with a more collaborative interaction with the public. In an ideal world, we would have genome sequences—and other genomic data—attached to medical records as part of a giant, cooperative-learning process. Within a modest number of years (less than a decade, I would guess), the cost of annotating a medical record with extensive genomic data will become trivial compared to innumerable other costs associated with the everyday practice of medicine. The motivation for integrating these data into medical records will not be, in most instances, to guide care but just to learn. We need to enlist the public in a grand bargain: each individual puts something into the system (his or her data and health history) and takes something out (occasional improvements in his or her care, guided by expanding knowledge). Over time, this scenario would be a win-win situation. The obstacles to making it real are enormous but largely non-technical. Privacy, inter-operability amongst incompatible electronic-health records, management of incidental findings (i.e., insights gained by analyzing genomic data that might have health implications but are unrelated to the patient’s reasons for engaging the health-care system), and many other issues stand in the way. We should shift more of the dialog about genomics toward building this partnership rather than hyping every little indication that genomic data might be useful in guiding health care.

In a society where few non-scientists understand why devoting federal funds to fruit-fly research is important, I’m pleased you’ve included Natalie in the panel because it seems that scientists and science writers have a huge task to try to explain genetics to the general public. Are scientists being encouraged to become better writers and science communicators? (There is not much funding for science education, etc.).

Explaining genetics, or much of anything else, to the general public is a challenge. We put considerable emphasis in graduate education on communication within our own scientific specialties. Students are constantly presenting their own research at laboratory meetings and to audiences within their programs and departments. They often also analyze current papers outside their immediate research area for similar audiences. These programs are conspicuously successful: today’s students are much better communicators, particularly in oral presentations, to specialized audiences than were the students of a few decades ago. Even for specialized audiences, we should put more effort into writing skills, partly to counter-act a decreased emphasis on these skills at the K-12, and even the college, level. However, we do not do much to help students improve their ability to communicate to general audiences. The problem is fractal: it is difficult for a geneticist to explain what she is doing to a physicist, harder to a poet, and harder still to someone outside academia. Rarely does the same person do well across this full spectrum of audiences. It is worth thinking about how we could change the graduate-school culture in ways that made at least small inroads into this challenge.

In selling the project to the public and congress, do you think the human genome project over-emphasized the prospect of medical benefits of sequencing the human genome over the basic science benefits? Which (medical or basic science) should be emphasized moving forward?

I testified three times in front of Congressional committees and always emphasized basic science, as I have consistently done also with the press. Obviously, I think we should continue to stress a basic-science message going forward. However, I do recognize that part of the public-communication challenge is to relate science to people’s lives. There is no perfect recipe, but I do not think hype helps, certainly not with Congress. Pandering is one thing that professional politicians recognize readily.

How do we educate the public accurately on the state of advances of genome sciences?

It is probably impossible, but candor is a good place to start. We have nothing to be ashamed of. Genomics has already transformed basic biology and had important practical applications. The field is still in its infancy and may be expected to yield even greater returns in the future.

Would the panel talk about the anti-science movement? On Friday, Chris Mooney will be in Seattle talking about why people mistrust. Does this political reality and budget cutting threaten the momentum that Keith Yamamoto described?

I ended the Panel discussion by saying that the message I heard all evening is that science should concentrate on tending its own garden (a phrase borrowed from Voltaire). Irrationalism is hardly a new phenomenon and mistrust of elites is not new either. We are a privileged sector of society and largely treated very well. We have little control over fluctuating public attitudes toward science. At least in principle, we have more control over our own internal culture. We do not put a high enough priority on keeping it healthy. In genomics, a lot of scientists who should have known better cheered on Celera in its effort to privatize genomic data. In the process, they turned a blind eye to an astonishing level of self-promotion and sweeping distortions of the underlying science. I think this happened mostly because many scientists enjoyed seeing the scientific establishment’s nose tweaked. In climate science, it is obvious that intolerance toward minority opinions about unresolved, and highly technical, issues has gone too far. Throughout science, there is too much looking the other way when scientists say ridiculous, self-serving things. If we want more trust, we have to earn it.

Resource constraints are likely to slow the momentum of genomics and other areas of science. Nevertheless, science is receiving better treatment than most sectors of the discretionary federal budget. We should do what we can to optimize the effectiveness with which we use the large resources we still have.

Do you think science is more or less respected now than 2, 5, 10, 20, 50, 100 years ago? (dystopia or utopia?)

This is an interesting question but would be better directed to a cultural historian than a scientist. I am sure that mixed views of science co-existed during every historical era. My impression is that science has lost some ground during my career, which now spans nearly 50 years. However, we have done better than most other powerful sectors of society. We live in a period of decreased public confidence in all institutions.

The Eichler Lab today published a paper on a gene involved in human evolution. On the UW website, where this finding was reported, the first two responses were from creationists who were offended. How can we use genomics to broaden public understanding of evolution?

For every creationist out policing Darwinist web sites, there are legions of students who are amazed at the record of evolutionary events transparently present in the genomes of contemporary organisms. I think genomics is broadening public understanding of evolution. We should not expect to save every soul.