Marnie Gelbart: Captivating imagination, inspiring discussion, and empowering patients
Good science speaks for itself. That may be true to a certain extent, but with so much access to information and the ease with which anyone can publish their opinions – sometimes, good science needs a helping hand to make sure its benefits are fully understood.
Public outreach and engagement is an increasingly important part of any major genomic project. The public have the most important role of all to play in all of this, as their consent is critical to advancing research. This might sound like a relatively straightforward thing to do, but it’s one of the toughest jobs out there right now.
Developing genomic literacy is a crucial step in transforming healthcare. Policy makers, physicians, patients…there’s a lot of educating to be done out there for people for whom genomics might not even be that interesting. Fortunately, the Personal Genetics Education Project has developed an exceptional team to get out there to engage and educate from the ground up!
FLG: Visitors to The Festival of Genomics will have noticed a unique stall in amongst the technology vendors – the very popular pgEd stall! While most people who made it out across the two days will have left knowing all about what you guys do, there are still people out there who won’t be so familiar with your work. So for all the people who didn’t make it out to Boston, what is pgEd?
MG: The Personal Genetics Education Project (pgEd.org), based in the Department of Genetics at Harvard Medical School, seeks to shorten the time it takes for information about breakthroughs in genetics to reach the public. We’ve found an approach for raising public awareness that, in our experience, puts people at ease, captivates their imaginations, and inspires discussion. No topic is off limits. We even talk about space travel to get people excited about genetics and where it is going. There’s a whole world to reach, so pgEd finds strategies to engage broad audiences. These include working with writers and producers from television and film, engaging policymakers through a series of Congressional briefings, creating online “games” such as Map-Ed (map-ed.org), and educating through high schools and public forums, most recently libraries and religious institutions.
FLG: Outreach efforts seem to be taking an increasingly prominent role in advancing genomics. Is this something that’s unique to genetics, or is it a result of seeing the effects of a lack of education impacting the public’s attitude in other areas?
MG: I think this stems from an overwhelming sense of responsibility amongst geneticists. We are inspired by where this revolution in genetics is going, the capacity to improve health and save lives. At the same time, we’re acutely aware that the accelerations in genetics are only widening the gap between what science is making possible and what many in the general public understand. We have a responsibility to all 7 billion people on the planet to close that gap and make people aware. We have missed the boat on this in the past, and we remember a terrible history of eugenics. We are determined that this revolution as we move into the new era of genetics is going to be done well. This is exactly the reason pgEd was founded in the Dept of Genetics at HMS, and pgEd feels a tremendous urgency because of the rapid pace of development in the field and the growing demand for public participation.
FLG: As well as your work engaging the public directly, you also organise congressional briefings. The first took place in May last year. It was such a success that you’ve since been organising follow up briefings to address specific issues more in-depth. How much weight of responsibility do you feel being associated with Harvard Medical School?
MG: Perhaps the greatest responsibility pgEd feels is to start discussion, generate interest, and create opportunities for sharing information. We go to Washington, D.C. because our political leaders have our nation’s ear, and we hope to engage them in helping to raise awareness. We have no legislative agenda, no policies we’re pushing – and I would argue that this is a big part of why we’ve been so successful. We’ve organised three briefings so far, co-hosted by Congresswoman Louise Slaughter and Senator Elizabeth Warren, and we’ve been blown away by the interest we’ve found on Capitol Hill. Our audience grows each time, and the buzz in the room lasts well beyond the 90-minute program.
FLG: The success of the briefings is in no small part down to the amazing panels you brought together to represent genetics. Should more of the scientific community strive to get involved, or is it something that you need a passion for?
MG: Yes, our panelists have been phenomenal and deserve so much credit for getting discussions going in DC. I am struck by how easily we’ve been able to assemble the panels – especially because we’re usually working on a tight timeline. I think this reflects how much interest there is to get involved. pgEd has found no shortage of support from scientists to participate in the briefings, contribute to Hollywood consultations, and attend our GETed conference. Earlier this year, 18 labs in our department took part in a pgEd competition to see who could engage the most people using our online Map-Ed platform. The scientists brought in 5,200 pins in just under 2 weeks, and I daresay they had a good deal of fun doing it. The many wonderful conversations my colleagues and I enjoyed at the Festival give me great confidence that we’ve only begun to scratch the surface.
FLG: Who have you managed to get involved so far? Are there any individuals who you think do a particularly good job at educating and advising?
MG: We’ve had 18 panelists to date from genetics, medicine, bioethics, law, anthropology, education, and public engagement. Our panelists have included Heidi Rehm, Jeff Schloss, Pardis Sabeti, Mildred Cho, Jim Evans, Nita Farahany, Claire Fraser, Duana Fullwiley, Hank Greely….. Honestly, I want to list them all because each one of them has contributed an important dimension and brought in different stakeholders. When I look around the room after the briefing, everyone has people waiting to talk to them. I don’t think we’ve missed the mark yet. We’re thrilled with the panel for our next briefing – Jennifer Doudna, Diana Bianchi, and George Church – will be no exception.
FLG: Of course one of the best genetic advocates is pgEd Director and Co-Founder, Ting Wu. What brought her and co-founders Jack Bateman and Dana Waring together to make it all happen?
MG: pgEd got its start in 2006 in the early days of the Personal Genome Project (PGP). Ting, who is married to George Church, wanted to meet volunteers for the PGP and so they organized a family vacation/road trip around it. The conversations with prospective volunteers and their family members were very much the driving force to create an educational effort, separate from any research endeavor, to raise awareness about the benefits and implications of personal genetics. Ting started talking about it with Jack Bateman, who at the time was a post-doc in Ting’s lab and now is a professor at Bowdoin College. Jack kept mentioning perspectives from his wife, Dana Waring (now, pgEd’s Education Director), whose background is in sociology, history of science, and women’s studies. Ting quickly invited Dana in to survey the landscape, and the intellectual foundations of pgEd took root as an educational branch in Ting’s lab.
FLG: We touched on it earlier – genetics is quite an emotive topic. It’s very much part of us. People will relate to that very differently. How important is it for you to have a diverse team to help you achieve all that you want to?
MG: The diversity of our team is one of our greatest assets. pgEd is by design not all scientists. What better way to lower the barrier for non-scientists to talk about genetics than to have a non-scientists lead the discussion. In fact, pgEd rarely, if ever, says GATC in a presentation; rather we focus on the benefits and implications as a hook for getting audiences excited about where genetics is going. As geneticists, Ting and I make sure we handle the science well. Other members of the team keep us up-to-date on the societal developments and make sure we use plain and accessible language to communicate the science.
FLG: You were doing some interesting work on the role of chromosomal organisation in gene regulation at Brigham & Women’s Hospital/Harvard Medical School before joining the team. What made you jump across from scientific research?
MG: As a post-doc, I was studying how precise domains of gene expression are established using sex-specific regulation of the X-chromosome by the dosage compensation machinery in Drosophila as a model. When I encountered pgEd at an afternoon-long course led by Dana and Ting, I started staying in touch. I had a growing interest in communicating science with the public and was amazed by the accelerations in the field of genetics. But truly, the thing that solidified my leap to pgEd was when I underwent carrier testing and my doctor drew 17 vials of blood. It was a profound moment. If I, with my PhD, could not wrap my head around it, then how can we expect anyone else to? It is the “personal” in personal genetics that motivates me every day.
FLG: One of the grey areas in genomics right now is in how results should be reported to patients, and the nature of what they actually consent to. Is this an area you’re active in?
MG: As an observer who gets to think about how to communicate some of these issues with the public, I think that perhaps there is something here about the power of a dilemma to rivet people, inspire the imagination, provide an opening to address key misconceptions, and allow people to see both sides of the issue. We strive to give people the confidence to ask questions so they are better able to make informed decisions if and when they encounter these sorts of issues in a doctor’s office or as a research participant. Also, we seek to show people that there are no simple answers to these questions, that it is unlikely that everyone will ever agree, and to encourage respect for this diversity of opinions.
FLG: You also work with the film and television industry in an advisory capacity. We always have a movie review in our magazine – movies are a useful barometer to gauge how people out there are thinking about genetics. How big a role does the entertainment industry have in introducing genetic concepts and genomic technology to the public?
MG: The entertainment industry puts out movies that can draw upwards of 20 million people in a single weekend and television shows that can reach that many people in an hour. This is a powerful strategy for raising awareness, so pgEd is working with the Science & Entertainment Exchange, a program of the National Academy of Sciences, as well as Hollywood, Health & Society at the University of Southern California to interface with writers and producers. When we ask them how does genetics rank in terms of topics that interest them, they’ve told us it is right at the top. When I go into a high school classroom, or even when I talk to adults, people are trying to relate what I’m talking about to their own experiences. I hear people bring up movies such as GATTACA and Jurassic World all the time. Of course as a geneticist, I want the science to be done well. But even when it is not, it still can start the conversation and open the door for people wanting to know more. And when I tell people that pgEd advised Grey’s Anatomy, there’s an instant connection and that throws the door open, too.
FLG: A two part question for you here: What’s the biggest show or movie you’ve worked on? And which one does the best job at representing genetics correctly?
MG: This is a tricky question because we sign all sorts of confidentiality agreements. We don’t always know which show we’re advising or whether the information we provide will make it into the final script. I can tell you that the shows we’ve advised include Grey’s Anatomy, Elementary, Perception, Blink, Starcrossed, The Following, Lucky 7, The Wolf Man, Make Your Mark, The 100, Switched at Birth, and How to Get Away with Murder. The writers and producers ask us all sorts of questions – about transplantation, organ donation, how to kill characters off in an unbelievable number of ways, and how to plant DNA at crime scenes. We kept our mouths shut on that last one. When Grey’s Anatomy wanted to open a genome sequencing lab, they called us.
FLG: So as things stand, you guys are helping educate kids, inform the public, and make sure policy makers know what they need to. Is there anything you wish you were doing but don’t have the time to yet?
MG: Oh my goodness, yes. Everyone at pgEd’s plate is overflowing. I wish we could hire a few full time people just to take on new ideas that came up at the Festival, particularly collaborations for expanding internationally.
FLG: What’s next for pgEd?
MG: We’re gearing up for our fourth Congressional briefing on November 17th. The last two briefings have focused on emerging policy questions, and so we’ve decided to dedicate this next one to some of the hottest topics in genetics, gene editing, non-invasive prenatal testing, and nanobots. Our panel has captured the attention of the White House, and we’re planning a session at the Office of Science & Technology Policy as well. A number of other things are in the works (including a stop at the SF Festival), so stay tuned on at pgEd.org!
FLG: Thank you so much for your time. Is there anything else you’d like to let readers know?
MG: We would love to invite the Front Line Genomics audience to take a look at Map-Ed. Map-Ed is a series of 5-question quizzes about genetics and related topics. It’s designed so everyone gets 5 out of 5 and then can pin themselves on our world map. We invite readers to take the questions, pin themselves and share the link with their friends, family (especially non-scientists) email, twitter, facebook –have fun with it! Let’s see how many pins you can get by the next Festival!
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