It was an unlikely group in an unusual setting posing previously unasked questions about once-unheard-of scientific advances.
Crammed into a conference room one floor above the Sam Adams Brewery in Boston, about 30 parishioners of the nearby Christ the King Presbyterian Church — friends, professionals, and parents of young children — munched on pizza one Sunday afternoon in early 2016. But they weren’t there for mere fellowship. Rather, they had gathered to contemplate how increasingly available information about personal genetics — and emerging technologies that can alter human DNA — might influence decisions they make and those made for them.
As the pizza disappeared, questions and concerns bubbled up: Will all newborns someday have their genomes sequenced? Might gene-editing tools enable traits like eye color to be chosen before birth? Could wealth determine who has access to potential gene “enhancements” that create a superior “breed” among the rich?
The answers were startling: Yes, each of these scenarios is a real possibility, the group was told.
“There were titters of awe at hearing things like that. It’s like hearing you’re actually living in Brave New World,” says Charles “Chad” Baldanza, an assistant pastor of Christ the King’s congregation in Jamaica Plain and Roxbury, Massachusetts. “It’s not far off, so it’s a bit of a thrill, but not necessarily a positive thrill.”
The standing-room-only event was convened by the Personal Genetics Education Project, a nonprofit initiative founded in 2006, housed within and largely supported by the Department of Genetics at Harvard Medical School. Dubbed pgEd and hailed for spreading the message that genetics knowledge is both essential and accessible, the program’s mission to enlighten, inform, and foster dialogue about personal genetics — as well as its ethical, legal, and social implications — extends not only to communities of faith but also to schools, scientists, Congress, Hollywood, social media, and other realms.
Being in a paper gown in a dark room was a really difficult time for me to learn about statistics and probability.
Cascade of Newer Technologies
Dana Waring co-founded pgEd with her husband, Jack Bateman, a Bowdoin College genetics professor, as well as Ting Wu, a Harvard genetics professor. Waring was inspired by a jarring personal experience. An ultrasound during her first pregnancy showed one of six markers for a troubling genetic condition in her son; repeated assurances from her geneticist spouse and radiologist sister-in-law couldn’t convince her the risk of calamity was low.
“I go back to that and think, being in a paper gown in a dark room was a really difficult time for me to learn about statistics and probability,” says Waring, whose background is in sociology, the history of science, and women’s studies. “So, a lot of what drives my work is [the idea] that we want to connect with as many people as possible about the potential for genetics in their lives at a moment they’re ready to learn and not under duress.”
A cascade of scientific advances, particularly since the turn of the millennium, has fueled pgEd’s efforts by lending urgency to the notion that virtually everyone needs at least a basic understanding of genetics.
“The advancement of personal genetics has been dubbed an ‘unstoppable train,’ ” pgEd staff members wrote in 2012 in the Yale Journal of Biology and Medicine. By then, six years into the effort, their mission clearly encompassed a desire to “instill confidence in individuals to ask questions, make informed decisions, and respect the opinions of others.”
This dizzying confluence of technologies is led by next-generation gene sequencing that makes it fast and affordable to obtain personalized genetic testing through a variety of direct-to-consumer (DTC) companies. These companies’ tests, several costing less than $100, provide an array of answers about what part of the world your ancestors came from, whether you might develop a certain disease or pass a predisposition for another to children, or how your body will respond to specific drugs.
Add in news of technologies that most have only heard about in sound bites — embryoselection and “designer babies” among them — and pgEd founders surmised that the genetic literacy of the general public could use some shoring up. They contend that abundant personal genetics information is not only becoming central to making informed healthcare decisions, but it is also generating social, ethical, and legal dilemmas.
“We saw how fast this was going and how many vectors of society we could affect, and we wanted to jump into the fray,” Waring explains. “Our group is focused on education and ethics — we’re not going to tell everyone you should get your genes tested.
“As a person who studied the history of science, I can tell you an informed and engaged population is our best chance at having the potential in genetics come to fruition,” she continues. “Of course, the big hope is that genetics are going to improve health, improve people’s lives. But at the same time, we know many of the emerging questions in biotech are going to find their way to the ballot box. And we’re trying to have conversations with people to look at it from multiple perspectives.”
Preparing Today’s Youth
Perhaps the largest component of pgEd’s work has been with students and teachers at high schools and universities. This bottom-up focus recognizes that today’s youth — millennials and so-called digital natives — are also genomics natives whose entire lives will have been colored by the advent of genetics in personalized medicine.
Along with creating readily accessible lesson plans for educators that don’t just skew toward biology class, but are equally applicable in a social studies, law, or psychology classroom, pgEd has reached hundreds of teachers and thousands of students through interactive workshops in several states. Lesson topics range from genes and reproduction to personalized medicine, DTC testing, and genetics’ use in athletics and criminology, all while asking students to also dissect the personal, family, and social repercussions of greater access to genetic information.
Far from asking students to regurgitate information about genetics and related technologies, lessons instead require them to ask seminal questions about the material, Waring explains. A typical classroom session begins with a five-minute exercise to focus students on a multifaceted question — such as the potential uses of the gene-editing tool CRISPR — and presents case studies that students can draw from.
“We ask them, ‘How do you get the information you need to make a good decision? What experts should you talk to?’ ” Waring says. “It’s using all these skills that is meant to be the centerpiece of education, such as critical thinking and supporting opinions with data.”
It’s About Them
While the material can veer into the complex, it’s purposely designed to appeal to those with no prior exposure to genetics. Lauren Tomaselli, pgEd’s director of curriculum and training, considers herself an excellent example of the typical student pgEd is interested in reaching.
“I never considered myself a science kid and had no thought of going into science as a career,” says Tomaselli, who was previously a history teacher in the New York City public school system. “We work to engage students who don’t see themselves as particularly successful in science. We bring writing and debate into the classrooms — to be able to talk about the ethics related to embryo selection, for instance.
“They can understand those questions even if they can’t understand everything about how an embryo is created,” she adds. “I think there’s a sense that it’s about them — and a sense that they’re going to be facing choices that never existed in the past. It really engages young people to say you’ll be the first generation impacted by this. You can set policy, vote for things, shape the discussion, be part of the research, [or] be a science writer.”
Shawn Bayrd’s career path has been indelibly shaped by his experiences with pgEd. Now a junior at Bowdoin College in Maine, Bayrd was a 15-year-old high school sophomore when he took a weeklong summer course in personalized medicine and bioinformatics. Waring showed up at the course one day for a pgEd component that asked Bayrd and his peers how the DNA extraction techniques they were learning in the lab applied to bioethics and how DTC genetic test results could be a double-edged sword.
“The most important thing we were to understand was to just be careful and be very discreet about what we tell to whom. There are a lot of legal ramifications, even though the [genetic] information is unchangeable,” says Bayrd, who plans to pursue a doctorate and someday run a genetics lab. “It was eye-opening — kind of scary but good to know.”
Appealing to the Masses
But the young and green are not pgEd’s sole target audience. To expand “the back-and-forth,” Waring says it is vital to reach diverse groups in creative ways. These include Congress, the film and television industry, faith communities, libraries, and social media, keeping a sharp focus on how each can share information (or misinformation) as well as further the conversation about personal genetics.
On Capitol Hill, with the help of Representative Louise Slaughter and Senator Elizabeth Warren, pgEd organized a well-attended series of Congressional briefings on topics such as precision medicine, gene editing, Ebola, microbial genomics, forensics, non-invasive prenatal testing, and DNA nanotechnology. The briefings called attention to the need to protect genetic information in the workplace and for insurance purposes, which Slaughter called an “urgent” issue.
“As we see genetics moving more and more into the public sphere and being a topic on ballot boxes, we felt bringing some totally bipartisan viewpoints to Congressional leaders and staffers would be a welcome way to convey some of what’s happening in the field,” Waring says. “We don’t come down on one side or another, and we use that model [with] Congress.”
“We try to make people feel really com-fortable with the fact that you can understand and have an opinion about things related to science without fully understanding the scientific process involved,” Tomaselli says, elaborating on pgEd’s appeal to the masses.
In the span of a TV episode or feature-length film, pgEd has been able to reach millions through its work with Hollywood producers and writers. Consulting on shows such as Grey’s Anatomy, Elementary, and The Following, and advising film writers on script development, project staffers have been able to dispel myths about genetics. Grey’s Anatomy writers, for instance, were briefed by pgEd’s Wu about gene testing related to Alzheimer’s risk.
“Producers and writers [typically] want to know if something is possible, likely, or the craziest thing that could happen,” Waring says. “It’s this opportunity — if you can insert a concept, an idea, [or] a fact into the broader public conversation — that fits with our mission of engaging people [from all] walks of life.”
Social Media and Faith Communities
Social media efforts run the gamut from online quizzes to video vignettes featuring regular folks sharing stories about how personal genetic information has affected their lives — from health decisions to their very sense of identity. Once again, viewers are invited to join the conversation.
“The videos are an emerging platform for us,” Tomaselli says, “and for the people watching them. They give a great couple-of-minutes snapshot of some of the big ideas.”
One of the videos shows a social worker talking to her female teenage client whose mother died of an inherited breast cancer. Another depicts a man, who’s well-versed in genetics, attending a doctor’s appointment with his wife, who is scheduled for surgery. The husband explains in the video how he inquired about pharmacogenetic testing for his wife to determine if a certain blood thinner would work for her, but the doctor didn’t take his concerns seriously.
Obviously, big ideas are at the core of faith communities, perhaps easing pgEd’s path as it connects with clergy — from pastors to rabbis to imams — to facilitate meetings like the two eventually held with Christ the King Presbyterian Church congregants. Members of minority communities, whose voices are often unsought or unheard, are especially important, Waring says.
There’s only one rule at these gatherings: No preaching allowed — from pgEd. “We’re not trying to convince people one way or another about anything,” Tomaselli says.
“A lot of people are looking to their religious leaders and communities as a place to get trusted information,” Waring explains. “Our meetings bringing together leaders of different faiths have [allowed us] to hear their different perspectives on genetics and what their faith has to say about it. We’re learning a lot — it’s one of the ways that this two-way street is really valuable for us.”
That level of discourse was apparent when one church parishioner explained to pgEd staff that for her, suffering could be seen as part of her faith. Thus, she wouldn’t necessarily want to use genetic engineering to avoid any adverse health condition, even if she could.
“There’s probably a consensus among geneticists that it’s good to relieve people’s suffering from genetic diseases,” Tomaselli explains. “But here are two different starting points. Not everyone’s looking for help.”
Christ the King associate pastor Nathan Barczi says the ethical questions posed by pgEd were his primary interest, but he also felt the organization brought something to the table he couldn’t possibly offer his congregants. “It seems like a complicated enough area that I don’t think I could be equipped to understand the ethical questions without understanding the science itself. It seems very easy to oversimplify the science without understanding what geneticists are doing,” he says. “This is a model of how to have civil discourse that’s really lacking in our society right now.”
Staying nimble has proven critical to pgEd’s mission. “We published a lesson plan about CRISPR a year ago and have already had to alter it three times,” Waring says. “So much in genetics has changed in 11 years, but a lot of school textbooks are the same.”
One of the biggest misconceptions pgEd dispels centers on the myth that a single gene is responsible for most diseases. Many don’t understand that complex traits — and conditions such as heart disease, diabetes, and many cancers — result from interactions among several genes, as well as their interactions with lifestyle and the environment.
“So much of our work is about advancing the idea of genetic complexity,” Waring explains. “When we have a lesson about genetics and athletics, for example, and you hear, ‘Oh, I have the speed gene,’ we push students to think more critically about that idea. It’s a simplistic idea that there’s a gene for speed. A lot of our work aims at asking students to see it as a broader picture — not nature versus nurture, but how genes and environment can interact.”
Lisa Parker, the director of the Center for Bioethics and Health Law at the University of Pittsburgh, praises pgEd for driving home such crucial points.
“The project [tries to] present that there’s a blending of genetics and environmental factors responsible for most anything we care about,” Parker says. “That’s been a real challenge for people who’ve been working in genetics and genomics from the beginning — to try to create interest and get funding and sell people on the importance of the work without hyping what genetics really contributes.”
The Work is Far From Done
“A lot of kids ask us, ‘Is being transgender genetic?’ That’s one of those questions where I have to admit we don’t have the answer,” Waring says. “We’re trying to develop a piece that’s looking at the variation we do know about, even in sex chromosomes. By going out to different communities, we bring a lot of that back and put it in the curriculum. We want to make sure when we go places, people see themselves reflected [in what we discuss].”
Potential for Genetic ‘Surprises’
Bowdoin College junior Shawn Bayrd was so motivated by his experience with the Personal Genetics Education Project (pgEd) that he decided to have his own DNA analyzed. The results definitely reinforced one of his biggest pgEd revelations — “how much our lives are run by previous circumstances that we don’t have any control over.”
To the best of his knowledge, Bayrd, 20, is a descendant of the Narragansett people, an Algonquian-speaking American Indian tribe from Rhode Island. But evidence of that ancestry was notably lacking in the Brunswick, Maine, resident’s 23andMe gene testing results, which proved both surprising and confusing.
“I don’t think a lot of Native Americans from my tribe have been [genotyped] by 23andMe. But [my results] also beg the question that maybe there’s something in my family history I never knew about,” Bayrd says.
It’s exactly this type of situation — personal DNA tests that show unexpected findings — that has caused some educators and ethicists to wonder if it’s prudent to incorporate such testing into genetics education. This approach may make the material more appealing and easier to digest, experts have said; research on Stanford medical students showed 70 percent who’d undergone personal genetic testing as part of their studies believed it helped them better understand human genetics.
But potential pitfalls to in-classroom testing — such as finding out your parent isn’t biologically related to you, or learning about a chromosomal problem — have created consternation among some educators.
David Walt was frustrated to run into this obstacle when he proposed integrating personal genetics testing into the medical school curriculum several years ago at Tufts University, where he was a faculty member. Some of the university’s deans worried that the information could negatively affect students’ mental health; Walt’s initiative was rejected.
“There was a lot of concern at the time that the students who were genotyped would need some kind of genetic counseling to help them both interpret their results and prevent them from obsessing over any kind of adverse finding,” recalls Walt, a scientific founder of Illumina, who is now at Harvard Medical School and a core faculty member at the Wyss Institute for Biologically Inspired Engineering at Harvard University.
“My argument was, it’s a consumer product that anyone can order for $99. Why would we expect well-educated med students to be in need of genetic counseling more than a consumer?” he asks. “What better way than to do it yourself, so when your patients come to you, you can help them with all the aspects you went through as an individual?”