CRISPR – with everything and for nothing
Adherents of CRISPR technology advocate equalizing access to gene editing
Vyacheslav Golovanov, Habr
A journalist, a company director and an imam enter the room. This is not a joke, but another day at the conference CrisprCon.
For two days in early June 2018, hundreds of scientists, industry representatives and health officials from around the world filled the amphitheater of the Boston World Trade Center to get acquainted with the possibilities of biologists' new favorite toy for DNA editing: CRISPR. The topics were controversial – from the ethics of self-experiments conducted by biohackers to the possibility of creating global oversight bodies. There was often a stunned silence in the rooms. But that was the point of the conference – CrisprCon was specially conceived in such a way as to take people out of their comfort zone.
"I'm going to talk about something that everyone is silent about," said Antonio Cosme, an urban farmer and community organizer from Detroit, who joined the expert group of the second annual CRISPR Big Ethical Issues conference to talk about fair access to gene editing technologies. He was referring to the results of the audience survey that had appeared before in a cloud of tags on the screen behind him, one of which was larger than the others: "eugenics".
"In Puerto Rico, where I come from, there are still sterilized aunts and grandmothers, victims of laws passed in the 1930s," Cosme said. "At a time when ethnic nationalism is covering Europe and Trumpian nationalism is covering the United States, the refusal to democratize such technologies is a clear threat to minorities who have no weight in the community."
As with any technology, the use of gene editing will be shaped based on the values of the society that uses it. Therefore, conversations about equal access to CRISPR are rapidly becoming conversations about the redistribution of wealth and education, which over the past three decades have been increasingly concentrated in ever-decreasing parts of the population. Today, the richest 1% of US families control a record 38.6% of the country's capital. There is a fear that CRISPR will not violate the existing inequality, but will strengthen it.
Florcy Romero, who works with the Harvard Personal Program of Genetic Education, developing materials for colored youth, demonstrates inequality more clearly. In the audience, she asked people with health insurance to raise their hands. Almost everyone raised their hands. In most of the communities where Romero works, about a third of people have insurance. "How can I talk about CRISPR if people don't have access to it, even though treatments exist?" she asked the crowd. In the USA, CRISPR-based therapy is just beginning clinical trials, but pharmaceutical and insurance companies are already facing the problem of assigning a cost to this procedure. The first gene therapy approved last year costs almost $500,000 today.
CrisprCon provides an excellent platform for raising such issues and highlighting difficult moral issues of a general nature. But for the second year he has been lacking solutions to these problems. The most tangible examples come from the expert community studying ecotechnologies – genetic methods of changing, controlling and even destroying species in the wild.
On stage, Dolphin Taizi discusses her work at a non-profit organization Target Malaria, which hopes to someday use a CRISPR-based gene drive to rid Africa of malaria by destroying mosquitoes that carry it. It took years to get the consent of the villages that would be most affected by such technologies, during which local residents willing to cooperate were hired, educational programs were created, and the consensus framework was adapted to local cultures. "We have not made decisions related to what consent and permission to operate should look like from our point of view," Taizi said. "Instead, we asked people from each country to define these concepts for themselves." The Target Malaria project is currently being deployed in Mali, Burkina Faso and Uganda, but so far not a single [modified] mosquito has been released into the wild.
This approach surprised the audience. Prior to the conference, a survey was released asking who, in people's opinion, should have the most control over decision-making related to ecotechnological research in the wild: scientists, national governments, international organizations or local communities? Most of the people chose scientists.
This upset another member of the expert council, Kevin Esvelt, a scientist from MIT, who gave the world the technology of gene drive using CRISPR. His laboratory was studying the use of technology on the islands Martha's Vineyard and Nantucket to instill in the population of white-footed mice immunity to Lyme disease, and stop its spread among humans. From the earliest days, scientists involved local health authorities in the project, held dozens of public hearings, at which they talked about the theme and design of the project. The Roosevelt group issued various options, including a gene drive, but the public voted against mice with bacterial components, and chose an approach in which mice were vaccinated with genes for resistance to ticks and Lyme disease. Not a single mouse was released without a formal vote. "Each steering committee had a special skeptic who had to point out things we hadn't thought of and make sure we were working with all care," he said. "And if the community decides it doesn't need it, we definitely won't do it."
Esvelt and Taizi are beginning to draw up rules for the responsible use of gene drive and other eco-technologies that future scientists and health officials will be able to follow. The conference participants hope that next year they will be able to see something in this regard. Fabienne Mondezir, a biology teacher from Boston Public School who took a sabbatical to work in the Harvard program, said that after the transition from words to deeds, participants will have specific tools that people can provide to their communities. But so far, she is also pleased that some of her students are interested in this issue.
Junie Arsen, who has just graduated from the Boston Latin Academy, plans to study biology and computer science. Someday she wants to become a pediatrician-endocrinologist to help other girls who, like her, suffer from polycystic ovary syndrome. Before the conference, she didn't know much about CRISPR. "It was like there was a huge information explosion in my head," she said. "I really like to keep track of the progress of this technology, especially in medical applications."
She also found out what a journalist, a director and an imam have in common. They all say that the most important thing in conversations about gene editing is not to talk, but to listen.
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