In an era where services like Ancestry.com and 23andMe make genetic testing as easy as mailing a saliva sample to a lab, what are the implications of these technologies in the context of political surveillance? This was the question that author Sheri T. Joseph had in mind after attending a lecture that discussed Adolf Hitler’s attempts to develop a blood test that would detect Jewish and Romani children who appeared Aryan. Through the story of Alexandra Tashen, a refugee looking to find her father across nations while risking being caught at every security checkpoint, Joseph explores the potential consequences of DNA technologies on genetic privacy in her debut novel, “Edge of the Known World.” 

On Wednesday, Sept. 27, Joseph discussed her novel at a Wellesley Books author event, moderated by her sister Prof. Susan Birren (NEUR/BIOL), Head of the Division of Science at Brandeis. The event attracted over 50 attendees, including Brandeis students, faculty and local community members. What followed was an insightful conversation about the novel’s themes and real-world connections, from genre-busting to abuses of genetic screening technology.

“Edge of the Known World” is a near-future love and adventure story about a young woman who Joseph terms a “refusé” or “a person refused permission to emigrate from their land of origin, who upon fleeing to avoid persecution or danger is refused entry or sanctuary by other lands.” Joseph’s novel imagines a world where a simple cheek swab at the Department of Motor Vehicles or airport could reveal your genetic makeup, making it impossible to hide, regardless of how you look or the documents you possess.

While the premise might sound like science fiction, Joseph and Birren emphasized that the novel’s dystopia is not far removed from current realities. The author pointed to China’s ongoing use of genetic testing kits similar to 23andMe to build a database of Uyghur and Kazakh minorities. This database, Joseph explained, is used for government surveillance to limit travel and control minority populations.

“None of this is far-fetched or abstract anymore,” Joseph said in a Sept. 19 interview with Birren and The Justice. “They’re using genetic screener tests to make sure people don’t travel, to monitor who you are when you apply for a government job — basically to keep people contained.”

This kind of surveillance is no longer the stuff of fiction. Just last year, a hack into 23andMe exposed millions of account profiles of Jewish and Chinese customers, whose genetic information was sold on the dark web. Joseph credited Birren with foreseeing some of the consequences of genetic testing kits nearly 15 years ago when she began conceptualizing systems that resemble what is happening today.

Despite the novel’s dystopian elements, Birren was quick to clarify that “Edge of the Known World” is not just a book about science. “This is a book about people, families and the seismic shifts in the geopolitical maps of the world,” Birren told The Justice. “It’s about the impact on individuals and families who are just trying to live their lives.”

However, the novel’s basis in science is undeniable. Tashen’s status as a refugee is complicated by a genetic marker — residual genetic material from a vaccine administered only in the Soviet-like regime that Tashen was born in. This tiny marker makes her vulnerable to exposure during genetic screening. Joseph explained that Tashen’s father, a scientist, developed a type of gene therapy to try to camouflage the marker, but the treatment is only partially successful. Every time she undergoes a genetic screen, there’s a one-in-ten chance she will be caught.

Birren expanded on the novel’s scientific themes by discussing how genetic privacy laws in the United States lag behind technological developments. While there are protections in place, such as laws preventing insurance companies from using genetic information to deny health insurance, many other areas remain vulnerable. “The regulation always lags behind the speed of the science,” Birren noted, “there are all these situations where, probably when the law was passed, people weren’t thinking about it.”

Joseph’s novel speculates about a potential future where governments — rather than just private companies, use genetic databases for more sinister purposes. But the reality, Birren pointed out, is that we are already living in a world where genetic information can be used for purposes other than health and ancestry. From denying life insurance policies to screening for government jobs, the potential for abuse is vast.

Furthermore, “Edge of the Known World” is also a story about love and adventure. Tashen’s journey is one of rebellion. After learning she is an illegal refugee smuggled into the U.S. as an infant, she spends her life avoiding genetic screens. When her father disappears, she sets out to find him, defying all the restrictions that have kept her safe. Along the way, she gets involved in a love triangle that complicates her journey.

“It’s really an adventure story, galloping from peril to peril,” Joseph explained. “But it’s also a multifaceted love story. It’s about romantic love, but it’s also about the love between adoptive brothers and the love between a father and daughter.”

This familial love is not just central to the novel’s characters but also reflects Joseph’s own upbringing. The author shared how her family’s intellectual curiosity and broad-ranging interests influenced the themes of the book. “A lot of this goes back to the family we were raised in,” she said. “Our father was big on ethics, our mother was an artist, and we had these broad conversations about everything from art to the future of society.”

A recurring theme throughout Joseph’s discussion was the complex ethics surrounding genetic privacy. While genetic databases can be used to solve crimes or provide valuable health insights, they can also be exploited for nefarious purposes. Joseph referenced the British Broadcasting Corporation’s six episode podcast series The Gift, which explores how millions of people have contributed to an enormous global DNA database by doing online genetic testing kits without fully understanding the implications.

Joseph’s primary concern, however, is the potential for governmental abuse. “The real focus for me is the potential for governmental abuse,” she said. “The values we have in the United States around privacy are very different from other countries. Watching how different countries are using these technologies is instructive, and we should all be paying attention.”

Birren offered a more optimistic perspective on the potential for good that these technologies can do for society. “Just because that’s a possible future outcome doesn’t mean it’s written in stone,” she noted. “There are governments and people thinking about the ethics of all of this, and it doesn’t have to go in a negative direction. Gene therapies are already being used to treat diseases like sickle cell anemia and childhood neuromuscular diseases.”

Ultimately, Joseph hopes that “Edge of the Known World” will spark readers’ curiosity, encouraging them to explore the real-life issues the story is rooted in. “You need fiction to hit the heart, but you also need factual basis to hit the brain,” she said. “My goal is that this book cues people’s curiosity about genetic privacy, surveillance and refugee situations, enough that they’ll go and pull up nonfiction to understand the real-world implications.”

In combining heart-pounding adventure with thought-provoking questions about genetic privacy and the future of surveillance, Joseph’s debut novel dares readers to consider the ethical questions raised by  emerging technologies. As we grapple with the consequences of our own DNA being digitized and stored, “Edge of the Known World” serves as a reminder that these issues are not far off in the future — they are happening now.