Debating Human Gene Editing
On Tuesday Oct. 29, scientists, medical students, and other members of the community gathered at Rock Hall to discuss the potential risks and rewards of human genetic modification following the screening of a film that dissects that very subject.
ANYA follows two characters, Libby and Marco, who are trying unsuccessfully to have a baby. When they ask for help from a friend who researches human genetics, an investigation into their fertility turns into a medical mystery.
Marco believes he has fallen under a curse as a consequence of leaving his tight-knit immigrant community in Queens. After some tests, they realize that there may be a medical basis to this curse.
Ultimately, they are faced with the choice of using gene editing technology in order to have a child, which could have serious consequences for their child, Marco’s community, and the entire human species.
While it might be possible to use gene editing to help couples like Libby and Marco conceive or treat genetic diseases, the unprecedented level of control could also lead to unintended medical complications or to changes in the overall human gene pool.
These consequences came up during a panel discussion, which involved film co-director Carylanna Taylor, geneticist Joseph Shieh from UCSF, Lea Witkowsky from the Innovative Genomics Institute, and Marcy Darnovsky from the Center for Genetics and Society.
Trained as an anthropologist, Taylor noted that the movie originally centered less on gene editing and more on its other topics, such as the pressures on individuals like Marco from immigrant communities to either integrate into their host culture or stay within the culture they grew up with.
Not until 2016, when the filmmakers began working with Dr. Ting Wu and the Personal Genetics Education Project, did the idea arise for an ethical dilemma surrounding gene editing.
“It’s not the story that we set out to tell, but the story that needed to be told at that time,” Taylor said.
Panelist Lea Witkowsky, a biotechnology policy analyst, said that Dr. Jennifer Doudna, a founder of modern-day gene editing, receives emails from people on a daily basis asking for help.
Witkowsky said that these kinds of pressures are on many researchers and clinicians from families hopeful about treating disease with gene editing, and that, additionally, ethics training remains uneven.
For example, the National Institutes of Health, which funds much of the research in the United States, requires students to take an ethics course, but those ethics courses may be limited to studies on cells in petri dishes.
“Often if you’re not working in a field that interacts with living people, you’re not going to take the course on informed consent,” Witkowsky said.
This may eventually lead to problems involving human research where patients are not adequately informed of their choices.
In 2018, researcher He Jiankui reportedly misinformed his patients about the risks of using gene editing tools.
Though the genetic editing could have theoretically reduced risk of contracting HIV from an HIV-positive father, there already existed safe practices to prevent HIV transmission to children, such as drug therapies and sperm washing.
Communicating these kinds of risks to patients is part of responsible research.
Aside from informed consent, the panelists unanimously agreed that there needs to be more public debate about the larger issue: whether human gene editing should be used at all.
This means that people need to understand the science behind gene editing.
Taylor said she knows that lawmakers, not to mention the general public, are still learning the basics.
“The word ‘species’ means ‘aliens’ to nine out of 10 people I talk to. ‘Mutation’ means ‘X-Men’,” Taylor said.
ANYA is a story to start bringing these words closer to home.
ANYA is scheduled to release Nov. 26. For more information go to the film’s website at www.anyamovie.com.