Festival of Genomics 2019 – Raising Genomics Awareness: An Interview with pgEd
This article originally featured in the event guide for our 2019 Festival of Genomics.
One of the best things about the Festival of Genomics is that it brings together a huge number of experts from a wide range of life sciences industries, research institutions and clinics, and provides a place to discuss the sector, share knowledge and further the progress of science. An organisation which also truly believes in this goal is the Personal Genetics Education Project (pgEd), which has done a lot to expand genetics knowledge even further afield and increase awareness of the benefits and societal implications of personal genetics. We spoke to them about their goals, their concerns, and some of their biggest successes to date.
People in the UK or Further Abroad Might not be too Familiar with pgEd. How was the Organisation Formed?
pgEd was founded in 2006 in the laboratory of Dr. Ting Wu in the Department of Genetics at Harvard Medical School. The cost of genome sequencing was declining, and it was clear that people would soon have unprecedented access to their genetic information. Ting (who happens to be married to George Church) took a family road trip and, from talking with people across the country, realised the huge awareness and communication gap between geneticists and non-geneticists. This led to active discussions in Ting’s lab (in particular, with a postdoctoral fellow named Jack Bateman, now professor at Bowdoin College) about what they could do. Ultimately they brought in Dana Waring, who has a background in arts and the history of science, to assess the landscape of the entry of genetics into society – impacts on health and reproduction, law enforcement, sports, and beyond. Together, Ting, Dana, and Jack founded pgEd with the mission of raising awareness and sparking conversations across all communities.
What Kinds of Activities do pgEd do to Raise Awareness and Start Conversations about Genetics?
pgEd has found that people are riveted by stories about genetics, especially the personal, ethical, and social dimensions. Stories seem to invite people to bring their own experiences and perspectives into the conversation, so the learning truly goes two-way. Over the years, we have developed a repertoire of programs for engaging with communities, as we have realised that a one-size-fits-all approach will not work. Our oldest program is educating through schools. We visit classrooms, create curricula that are freely available at pgEd.org, and hold training workshops for teachers. pgEd’s other efforts include holding Congressional briefings to inform policymakers in Washington DC, advising writers and producers of television and film, partnering with faith institutions, and engaging communities on the ground through libraries, youth groups, and other community organisations.
Given the Speed at which Genetic Technology and its Applications are Progressing, How Tough is it to Keep Pace on the Societal Front?
It’s a challenge. The content in our lesson plans sometimes goes out of date overnight. When a big story appears in the news, we do our homework as quickly as we can to provide teachers with accurate and balanced resources. What never seem to go out of date are the scenarios and discussion questions that encourage students to wrestle with the issues.
What Are the Biggest Concerns You Typically Encounter?
There are two big concerns that we often hear from communities: the privacy of their genetic data if they were to undergo genetic testing, and the affordability of new genetic medicine or procedures. Additionally, many of the communities that we work with express distrust towards some of the goals and motivations of scientists. Past ethical breaches such as the Tuskegee syphilis experiment, the case of Henrietta Lacks, the Havasupai incident, and the sterilisation of women in marginalised communities have created a legacy of distrust between these communities and the biomedical establishment. This, along with concerns about certain uses of DNA by law enforcement, contributes to a continuing sense of distrust.
What can Researchers do to Help, and Why is it Important that it Comes From Them Directly?
Given how rapidly genetics is entering society, it is more urgent than ever to make sure no community is left without information or without a voice in the discourse that is shaping the future. There are many ways for researchers to contribute: visiting their local school, giving a presentation in a library or museum, talking with local community groups or religious congregations. When pgEd visits with a group, people often tell us they are surprised that we have taken the time to meet with them and that we are willing to discuss the tough historical and ethical issues related to genetics. So, we find that when researchers are involved in public engagement, it goes a long way towards building a rapport with different communities.
Conceptually, the Benefits of Precision Medicine are clear. However, there is a Concern that it will Widen the Socio-Economic Divide. How do we make sure that the future we’re building is for the benefit of all?
Indeed, the potential for widening the gap between the haves and have-nots is a major concern, and one that will need to be addressed at many levels. At pgEd, we see disparity in access to information as one of the greatest injustices. This is why pgEd is working very hard for our efforts to be inclusive of everyone, regardless of socioeconomic status, geography, and ethnic background, so diverse perspectives are at the table to guide the path forward.
What Have Been Some of the Biggest Successes or Favourite Moments From your Time at pgEd?
The task at hand is huge and more urgent than ever. Yet it amazes us to see what is possible in as little as an hour when people with different backgrounds or stances—scientists and faith leaders, industry executives and community leaders, policymakers from different political parties—come together to talk about genetics. The frank, respectful conversations that ensue and the genuine partnerships that emerge fill us with optimism that the goal of comprehensive awareness is entirely achievable. And we are endlessly inspired by the young people who make connections between personal genetics, their lives, and their world, and are empowered to have a voice going forward.