The company’s promise is simple, and alluring. Send it your sequenced genome, along with your partner’s, and its proprietary algorithm will determine whether your children will be born free of genetic defects — or not.
“Jesse [Darden, the company’s CEO] wasn’t going to cure the diseases; he would just breed them out. It made a lot of people uncomfortable,” says company senior vice president Ronald Khan, played by actor Sheldon Coolman, in The Perfect 46, a movie about the dilemmas of genetic screening and matchmaking.
Written and directed by Brett Ryan Bonowicz, the feature-length film traces Darden’s personal and professional collapse as his marriage dissolves and the company’s algorithm turns out to have a problematic bug. Nonetheless, Darden, played by actor Whit Hertford, stands by his company, decrying those who label its service as “eugenics.”
After a screening of the film on Aug. 4 in Stanford’s Annenberg Auditorium, audience members were treated to a discussion by an all-star panel that included geneticists, a bioethicist and the filmmaker.
The event was organized by Rajini Rani Haraksingh, PhD, a genetics postdoctoral scholar at Stanford.
Haraksingh said she had planned to watch the film with a few fellow geneticists, but then reconsidered and decided to open the event to the public. Tickets were free, and the event was packed. The film tells the story of The Perfect 46, a fictional company, through documentary-style flashbacks during a burglary of Darden’s home. At that point he is alone, cast off from society, yet still adamantly supporting the goals of his company.
“I really think, as scientists, sometimes we get caught up in the details and forget to think about the big picture and impact of what we’re doing on society,” Haraksingh said. “There’s often a lot of fiction mixed in with the facts in popular science, and people tend to get carried away by Frankenstein predictions. I wanted to give the community a chance to engage with the experts and think about some of these issues realistically.”
Although it sounds perfectly probable, the capability to screen for nearly every potential genetic defect, or to match perfect genetic partners, is still quite far off, said Matthew Hill, PhD, a panel member and vice president of research and development at Natera, a San Carlos-based company that offers prenatal genetic screening.
“Technologically, it’s very hard to do,” Hill said.
In addition, scientists don’t know what every version, or allele, of a particular gene does.
“Often, we don’t know if it’s disease-causing or not,” said panelist Michael Snyder, PhD, Stanford professor and chair of genetics.
As scientists, sometimes we get caught up in the details and forget to think about the big picture and impact of what we’re doing on society.
Snyder said he sequenced his own genome — and those of his siblings — and discovered a genetic proclivity for type-2 diabetes, a condition he soon developed. Yet most versions of genes remain mysteries.
“There is no wild-type human,” said panelist Robert Nussbaum, MD, professor and chief of medical genetics at the University of California-San Francisco, referring to the genetic term for normal.
If the movie’s premise were possible, Nussbaum said, he would be disturbed by the notion of genetic counseling being managed by a company motivated by profit.
Before presenting patients with any of their genetic information, Nussbaum said he cautions them that he may or may not find anything he considers significant. He may find something he can’t interpret, he may find something unexpected or he may even find something that disrupts a patient’s view of his or her family.
“As a society, we need to think about whether that’s the right route,” she said.
Filmmaker Bonowicz said he didn’t start out to examine the murky ethics of personalized genetics. Instead, he wanted to create a low-budget, science-fiction film, then became intrigued by the field of consumer genetics.
Stanford Medicine integrates research, medical education and health care at its three institutions – Stanford University School of Medicine, Stanford Hospital & Clinics and Lucile Packard Children’s Hospital Stanford. For more information, please visit the Office of Communication & Public Affairs site at http://mednews.stanford.edu.