An audience of filmmakers and scientists packed the screening room of The Science & Entertainment Exchange Vice-Chairs Jerry and Janet Zucker for a salon on the subject of gene editing. Janet Zucker opened the night commemorating the late Ralph Cicerone, former president of the National Academy of Sciences (NAS), by quoting the call to action he posed to The Exchange years ago: “Can’t we have any heroic characters in the sciences?”
As if to answer Cicerone’s question, Anne-Marie Mazza, Director of the Committee on Science, Technology, and Law at the National Academies of Sciences, Engineering, and Medicine, took the stage to introduce George Church, “the George Clooney of scientists,” as Ann Merchant, Deputy Executive Director of The Exchange, later described him.
But first, Mazza oriented the audience to CRISPR—the acronym commonly used for Clustered Regularly Interspaced Short Palindromic Repeats—or in laymen’s terms, the hottest new development in gene editing technology. CRISPR allows scientists to make targeted changes to the human genome.
Mazza recounted that when CRISPR emerged, the NAS was contacted by many people wanting to know, “what is the science, what can it do, and do we have the right structures in place to allow this to continue?”
In response, the National Academies conducted both a summit and a consensus study to consider the religious implications, moral considerations, issues of access, and what a technology like CRISPR will do, not only immediately but also over time.
The conclusion reached by the scientific community was that CRISPR demands an ongoing discussion. For that, Mazza brought forward Church, a professor of genetics at Harvard Medical School and the director of personalgenome.org.
Whereas Mazza provided an overview of what CRISPR is, Church launched into specific examples of what CRISPR has achieved so far, and where it is going. About 2,400 gene therapies have already been approved. Age reversal is a clinical trial happening within the next year on dogs. There is gene therapy that makes you resistant to HIV, as well as potential therapy to allow recipients of organ transplants to thrive without needing to take immunosuppressant drugs.
Church explained how gene editing is creating inroads into climate change, offering opportunities to reverse global warming by editing biological organisms—think trees—to increase their carbon dioxide intake.
Church then elaborated on how CRISPR works, likening it to a word processor. Invoking the find/replace option, he explained how, if you want to replace every “and” in your story with “or,” you must be careful you do not have the words “stand” and “hand,” which would become “stor” and…. He then stopped himself and smiled. “I’ve never used those examples before.”
When the laughter died down, Church explained how this potential issue is why sequencing one’s genome is an important part of editing one’s genome. The cost of sequencing started out at $3 billion. It is now only $1,000. Research, he concluded, creates wealth.
Before the audience could reach for their checkbooks, molecular biologist Ting Wu stepped forward, sobering the conversation as she listed off the Tuskegee experiment, forced castration, and other ways the scientific community has lost the trust of many American communities. She then posited that the speed with which genetic technologies are coming into our lives far outpaces our ability to communicate with people about them.
Wu insisted that geneticists want to start a dialogue, and to this end they have engaged in teacher trainings, congressional briefings, and working with communities of faith. While these efforts are succeeding in closing the information gap for affluent communities, Wu lamented that the same could not be said for communities that are not as well off.
Wu told the story of her work in a largely African-American high school. When Wu announced that she was there to talk about genes, a young woman exclaimed that there was nothing wrong with her genes. “People say there’s something wrong with me because I get angry, but I’ve got a lot to get angry about.”
When Wu organized a meeting with clergymen, the few who arrived described the absence of their colleagues as an issue of trust. How, they asked, are they to trust a bunch of white people who only want to come talk with them when they have new genetic technology they want to check out?
Wu concluded that the greatest fear of scientists is that they will not be able to help a community in need.
Echoing Wu’s perspective was Michael Anthony Friend, creator of Go Sickle, a national task force focused on providing care for people living with sickle cell disease. A man of faith himself, Friend described the value of religion and faith-based communities to people of color throughout history. Before a person would listen to a physician, he/she would take advice from his/her pastor. Even now, adults with sickle cell, a disease that disproportionally affects people of African heritage, are usually assumed to be drug seekers when they go to hospitals.
But Friend asserted that African-American decision makers should be at the table with the scientists. He called CRISPR a new start, and advocated for national organizations of faith-based communities.
“Just as it’s great to have a young, strapping scientist like George to talk about the science, they also need a young, strapping patient like me to describe how CRISPR might help them,” quipped Shakir Cannon, co-founder of the Minority Coalition for Precision Medicine.
A sickle cell disease patient himself, Cannon, indeed strapping and radiating health, unsentimentally described his life with sickle cell. Diagnosed young, Cannon suffered a stroke at age 3. He now receives monthly blood transfusions to stay alive. But consistent blood transfusions often cause iron accumulation, so to combat iron overload, Cannon also receives nightly injections of Desferal, a drug that promotes iron extraction. Now 32 years old, Cannon’s infectious positivity made his story all the more heartbreaking. There is no treatment that specifically targets the root cell of sickle cell, he told the audience. But CRISPR has the potential to change all of that.
A man sitting near the front directed a question to Cannon: “Can you imagine your life without sickle cell?”
Cannon looked dismayed for a moment. “I’ve lived with this since birth, so I truly don’t know what life would be like without sickle cell. I imagine I would just be unstoppable.”
