Reverberations When Science and Policy Meet : From Earthquakes to Genetic Tests
By Reeteka Sud
Image courtesy of Deviantart.com. Image Credit: “Gene Code” / Hechiceroo.
* About six months ago, the US Supreme Court ruled unanimously against a Utah-based company, Myriad Genetics, that they could not patent genes that confer increased susceptibility to breast and ovarian cancers.
In this case, the central argument was whether “isolating” or “extracting” genes qualifies for patent protection. For everyone who wished for the public to have access to these diagnostic tests without having to take out a second mortgage on the house, this was great news!
* Six Italian scientists were among seven convicted for manslaughter in October 2012, for failing to give adequate warning for an earthquake three years earlier that killed more than 300 people.
In this case, the key to the dispute was the kind of cautious language scientists typically use in predicting highly uncertain events. The larger issue here is the misunderstanding that scientific risk assessment is the same as prediction – it is not! Even for those of us not working in the field of seismology, this verdict was a big shocker.
It does not take much to imagine the implications such a verdict might have to your own area of research. Well-known examples include the purported link between vaccines and autism; whether climate change is real and if it is affected by human activities; and the forever favorite – theory of evolution. The sentiments underlying such contentious issues can be summed up in this quote from one of the civil party (in the Italian lawsuit mentioned above) – “either they didn’t know certain things, which is a problem, or they didn’t know how to communicate what they did know, which is also a problem.” The latter half of the quote points to a gaping chasm between scientific community and the general public.
Scientists find themselves at a loss of words on “how best to put it” when the subject at hand is filled with uncertainties, and their audience expects definitive answers. “Miscommunication” doesn’t seem a strong enough word to reflect this gigantic issue with world-wide implications, that lead either to public indifference, or at its worst, mistrust of the scientists by the public at large.
This conundrum is part of the reason that the Penn Science Policy group (PSPG) came into being. The idea for the group was conceived about a year ago by 4th year graduate student, Mike Allegrezza. Currently the President of the group, he explains his vision for PSPG: “the goal of PSPG is to inform and engage researchers in ways that science interacts with society.” Though advocacy is a prominent theme among their activities in the last year, it does not confine their scope. “It is critically important to connect the general public to scientific research, which includes reminding people of the great scientific and medical achievements that have improved our lives, explaining the latest discoveries to them, and discussing exciting and tangible possibilities in the future that could be realized through science. These are things that both domestic and international researchers can do to increase public’s understanding of and support for science”, he said in an interview for this article.
To garner support from elected representatives from Pennsylvania, PSPG led a team of Penn students and faculty to meet with them in Washington D.C. last year. Speaking of this new effort, Shaun O’Brien (doctoral student and Academic Director of PSPG) commented, “We’re the ones in the trenches working in the labs. We see the effects of shrinking funding. I think that’s what they [elected representatives] need to hear.”
Last summer, PSPG, along with Penn’s Office of Govt. Affairs, coordinated visits for Pennsylvania Congress members to tour research labs at Penn and speak with researchers. The chief objective was for policymakers to get firsthand look at the ‘ground realities’ of budget sequestrations. PSPG also compiled research abstracts that were sent to members of Congress to show them how federal grants are being put to good use across diverse fields at Penn. These tracks are part of their continued efforts to protect NIH funding for Penn labs.
One way that we can all contribute is by showcasing our ongoing research projects at PSPG blog: anytime you publish, you can send a brief summary (in jargon-free language) to PSPG. To highlight contributions made by Penn researchers, PSPG publishes these summaries on their blog (http://pennsciencepolicy.blogspot.com)
Another parallel stream of PSPG activities constitutes preparing Penn researchers to communicate with elected representatives, and with the general public. Adam Katz of ‘Research! America’ was invited to campus to speak with Penn researchers about “how (and why) to engage congress as a research scientist”. Research! America is a non-profit organization working to make research a higher national priority. During his talk, Mr. Katz informed the audience that even though members of public agree that research should be a priority, they do not have a clear understanding of how research is funded. In a poll conducted by Research! America, only a small percentage of voters identified NIH as the main source of funding for basic biomedical research. As one of the audience at this talk, this was a stark revelation to me.
As scientists, it is part of our responsibility to rectify this error. The message would be different, or at least differently worded when you are talking to, say, a staffer from Rep. Chaka Fatah’s (D-PA) office, on why it is necessary to keep the pressure up on Congress so as to not further jeopardize research funding. It’s a different conversation than when someone casually asks “so what do you do in lab”, where the point is to inform members of public on “what” you do, and surely “why” that information is important to know. Nonetheless, it is our responsibility to inform and engage members of public.
On a related theme, PSPG also organized a talk by Dr. Paul Offit, the Chief of Division of Infectious Diseases at CHOP, and author of several books including his latest “Do you believe in magic? The sense and nonsense of alternative medicine”. Dr. Offit led a discussion on how scientists can combat misinformation. Highlights of the discussion included widely held misconceptions around dietary supplements. He recommended scientists use evidence-based science when communicating on subjects like this. In my experience on the subject, I find it healthy to remind yourself you are dealing with people’s beliefs (they believe taking multivitamin pills is good for them), so it is wise to limit the “matter-of-fact attitude” and make an attempt to connect with their emotions at the same time.
PSPG have also invited speakers to provide information on careers in science policy. Prominent examples included Dr. Richard Calderone from Georgetown University. A microbiologist with an active lab, Dr. Calderone also advises lawmakers on public health issues, and has started a Master’s program in Science Policy & Advocacy at Georgetown.
Information about upcoming activities of the group is sent on email listserv, and also posted on the group’s website (http://pennsciencepolicy.blogspot.com).
Postdoctoral fellows are welcome to attend all PSPG events.
Policy discussion on FDA regulation of 23andme
Tuesday, January 21, 5:30pm @ BRB 501
Please email the PSPG Discussion Group Coordinator, rsrivard5 @ gmail.com if you are interested in attending or want to learn more.”
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