ARCHIVED: Genetics Without Borders

by Katharine Reece MFA ’12

In America, it’s easy to take for granted the availability of testing and medical management for genetic disorders like hereditary cancer, Huntington’s disease, or spina bifida. But in underdeveloped countries, genetic testing barely exists.

Sarah Lawrence alumni Lindsey Alico MS ’11, Gillian Blaber MS ’11, and Ny Hoang MS ’11 want that to change. For their thesis work at SLC, they founded , a nonprofit organization dedicated to helping communities around the world without access to genetic services and counseling.

“In class, we were learning about all these countries where there are genetic disorders and no genetic counselors to help guide people through their diagnoses, or even to provide testing,” says Blaber, who is from Ontario. “So we were thinking, ‘Why is there no Doctors Without Borders for genetic counseling?’ We decided to just do it, and turned the organization into our thesis projects to get it all done.”

All three women say they pursued genetic counseling because it’s the perfect combination of their love for science and for working with people. Their enthusiasm for their project seems to vibrate around them—and never more so than when they’re describing their recent spring break trip to Guatemala to conduct a pilot run of GenetAssist.

Why Guatemala? In the fall of 2010, Guatemalan physician Dr. Marta Julia Ruiz visited Sarah Lawrence and spoke about her work with indigenous Mayan girls and women. At a lunch with Caroline Lieber, director of Sarah Lawrence’s Human Genetics program,  Dr. Ruiz shared a story of working with a young woman whose baby was born with a birth defect. The baby died without having a diagnosis, and Dr. Ruiz described her anguish in not being able to provide the woman with information for future pregnancies.

This is not an uncommon story in Guatemala, Lieber says. When Dr. Ruiz heard about Alico, Blaber, and Hoang’s work, she invited them to come assess the current state of genetic services in Guatemala, and to meet the practitioners caring for individuals and families with genetic conditions.

And that’s exactly what they did. Funded by an anonymous grant, Lieber, Alico, Blaber, and Hoang traveled to hospitals and clinics in three major cities in Guatemala in March 2011. They met with dozens of doctors and patients, and conducted surveys to get a sense of where their resources would be most useful. Dr. Ruiz arranged all of the appointments.

Hoang, who was born in Vietnam but grew up in Ontario, Canada, spoke about a particularly moving day when they were encouraged to interact with patients in a hospital.

“Previously, we were just meeting with physicians and hearing what they thought about genetics,” she says. But this time, “There was this one girl who was only a couple months old, and she had hydrocephalus, which is fluid build-up inside the skull. We’d all studied the condition in our classes, but seeing it was a completely different experience. I realized in that moment, ‘We need to be here.’ The people we met could have such better medical care if they had the right resources.”

The students were inspired by the overwhelming repetition of needs. Doctors and people in the communities they visited constantly told them that genetics was important and immediately necessary. However, corruption in the Guatemalan government, in addition to widespread poverty, creates a scarcity of staff and resources that would be needed to implement any genetic counseling or testing systems.

What can GenetAssist do to help? And where do they go from here?

“We’re still working with Dr. Ruiz over Skype, and her main goals are to prevent genetic disease through education, and to provide better services for those born with genetic conditions and birth defects,” says Alico, who has wanted to be a genetic counselor since her sophomore year of high school.

“There were so many opportunities for us to come in and help, especially with the education aspect in the clinics,” Hoang adds.

The trio knows that these large goals will be accomplished through smaller, practical steps. Hoang is currently sifting through all of the completed surveys and entering them into a database so they can analyze their data. They are actively searching for grants to help fund further work and travels.

The women also decided to bring GenetAssist under the umbrella of Sarah Lawrence’s 501(c)3 status—an affiliation they plan to maintain so that future Human Genetics graduate students can travel to other countries to help with their work.

“There is so much we want to do to help, so we’re trying to take a step back and see what’s the best thing to do next,” Alico says.

Blaber adds: “With e-mail and Skype, moving forward with GenetAssist is totally doable, even if we’re not living in the same city. After taking this trip, there’s just no way we can’t do it.”