Interview with Dana Waring, A Founder of the Personal Genetics Education Project

I recently had the opportunity to talk with Dana Waring, a member of Ting Wu‘s lab at Harvard and one of the creators/caretakers of the pgEd, the Personal Genetics Education Project. It was a fascinating conversation about the future of personal genetics and the dire need for more education of the public in this field. If you are interested in personalDevelopment Training as well as this project then you can visit development-academy.co.uk, or another site of your choosing, or you can just stick to the project which consists of genetics.
You can see a few recent mentions of the pgEd from other members of the DNA Network – EyeonDNA, and genomeboy.com.

I was very interested in Dana’s project, and she was willing to share more information with me and my readers via the following email interview:

TGG: How did you get involved with the Personal Genetics Education Project?

DW: The Personal Genetics Education Project is based in the Wu lab at Harvard Medical School. The main research focus of the lab is in a branch of epigenetics called homology effects, where the presence of homologous sequences can dramatically affect gene expression. Professor Wu wanted to add a new dimension to the lab’s focus, looking at the potential social impact of genetic testing becoming mainstream – personal genome sequencing to be exact. My background in women’s studies, the history of science, and higher education seemed like a good fit to explore some of the ethical, legal, and sociological ways genetics will personally impact people. With the Archon X Prize for Genomics and the Personal Genome Project well underway, it is clear that the science is moving very fast.

I have young children, and being pregnant got me thinking about the intersection of biotechnology and individual lives. During my pregnancies, I was genetically tested for the first time in my adult life, and having to live with various statistical formulas and risk calculations was confusing and frustrating. I wanted things to be black and white, and of course they rarely are. (As any parent will tell you, this is a lesson best learned early on, I suppose). It was a concrete example that what starts off in a basic research lab can impact the most personal and private spheres of a person’s life, and also that understanding “risk” is not easy. As people are able to learn more and more about their genomes, health insurance, reproductive medicine, and how we think about medical privacy may all be turned upside down.

TGG: What are the goals of the pgEd?

DW: Our main goal is to engage young people about the revolution underway in the field of genetics, and help them to think analytically about it. As with many technological innovations, the science is moving faster than the ethical, legal, social, and psychological frameworks.

Through workshops, student clubs, and the curriculums we are developing for teachers, we want to get people thinking about the possible benefits and risks of knowing the details of their genome sequences. They are going to be the professionals who live with and make sense of the massive amount of genomic data coming at us, and hopefully use it to better understand and improve human health. They also will likely face novel choices and dilemmas when it comes to medical care, particularly in the area of reproduction.

I wonder if someday sequencing an embryo (taking preimplantation genetics diagnosis many steps ahead) will be a common part of reproductive medicine. Like many people working in this field, we all keep coming back to the same question. Where do we draw the line? And who gets to draw it?

TGG: The website states that you are “creating materials and conducting education events for high school and college students so that they can become familiar with the ethical, legal, and social issues (ELSI) regarding personal genetics.” Why did you choose this particular age group?

DW: Students in high school and college will become independent health care consumers as personal sequencing hits the mainstream. Will they want to have their genomes sequenced? And how will they share the information they learn? How will the generation considered the most technologically sophisticated and open about their private lives respond? Maybe in the end they won’t embrace openness as everyone thinks the “facebook” generation will. Or possibly they will come to the conclusion that their genomes are no more special or in need of unusual protections than other “personal” topics – relationships, academics, or other medical issues and information.

The first major wave of children born of donor gametes or IVF are coming of age and starting to ask some rather complex questions about their origins, rightfully so. Others are talking about some of the unintended and unforeseen medical and social issues coming to light. We suspect that children born of a new biotechnology such as donor insemination might offer new perspectives and be able to put themselves in the shoes of their future children. How do you balance the parent’s willingness to try out a new technology and the interests of that potential, future child? A lot of our work aims to put future generations of children front and center in the debate. I suspect that personal genome sequencing might have similar issues a generation from now. What would my kids, too young to consent, think if I got myself sequenced and made it public – exposing half of their genetic makeup in the process? And if my husband did too? Maybe they carry something passed on from me that will cause them worry or invite scrutiny they never asked for or wanted. As teenagers, they might find it an egregious breach of their privacy or be furious that I accidentally somehow have limited them in terms of careers, insurability, or something else I haven’t thought of. Or they might not care at all and look back at this interview and laugh at their gloomy old mother – or note that I was worrying about entirely the wrong things. And that’s really the crux of it – I don’t think anyone knows for sure exactly where this will take us. Bringing young people, soon to be the main “users” of their genomes, into the conversation is one of our main purposes for starting the Personal Genetics Education Project.

Lastly, we hope to spark in an interest in non-traditional careers in science. Genome sequencing is just one of the many biotechnologies that will necessitate more people working in the fields of policy, intellectual property, bioethics, counseling, and education, to name just a few!

TGG: Based upon your own experience, what are some of the biggest hurdles in educating the general public about personal genome sequencing?

DW: I don’t think there is much disagreement about the need for new and interesting ways to engage the public on science. I wish it were more commonplace for scientists to be rewarded, career-wise, for teaching and for their outreach efforts. Also, there are just a few of us that are part of the pgEd, but we wish we could do this work on a larger scale! I am sure many people feel the same way about their own work.

One challenge we are finding is that teachers are under enormous pressure to cover a set curriculum and to help students pass various exams that are required by their state. It is not always easy to make room for something like this – Although I will add that the workshops we give could also fit with a history, politics, or current events class!

There are a lot of great public engagement models out there – I am thinking of the Dana Centre in the UK and also the many Science Cafes here in the US. I find that once people hear about personal genomes, almost everyone can dive right into the medical benefits and ethical issues and most often say to me “ Wow. That sounds great. But kind of scary, too. Is it scary or great?”

TGG: Is there anything that those of us with genetic backgrounds can do to help the Project, or help educate the public about the risks and benefits of personal genome sequencing? Do we have an obligation to do so?

DW: Giving me the chance to talk about it, especially as the school year is starting, is great. Thank you! Talking about personal genetics to as wide and diverse an audience as possible is one way to help out. The more people who are invited to the conversation, the better for the field and the better for society. Genetics as a preventative medicine tool is a new idea that will take some time for everyone to get used to.

I think it is crucial that the scientific community, geneticists especially, are careful to not overstate what can be learned from genetic testing and personal sequencing. Personal sequencing will not find “the gene for” many complex traits and multifactorial diseases, whether it be a health-related topic like obesity or heart disease, or intelligence, sexuality, or whether or not you prefer cats or dogs. Of course there are many traits and diseases that have a powerful genetic basis – no disagreement here. More interesting to me is: why are people so drawn to this idea that there is a gene “for” this or that? Biological determinism is an old idea that keeps coming back, new and improved as technology advances. There are historical moments when people seek biological explanations for what I see as social issues and inequities; war, poverty, discrimination, and academic achievement gaps between various races all come to mind. Yes, genome sequencing will likely open up an enormous number of avenues for research into disease and behavior, and shed some light on the interplay of genes and environment. Avoiding the hype, and speaking up when things are being oversimplified or misconstrued will go a long way to helping people weigh the risks and benefits of personal genetics.

I think the pgEd is an interesting and much-needed component of personal genetics, and I thank Dana very much for taking the time to discuss the topic and to share some of her thoughts with us today.