CRISPR supporters advocate egalitarian access to gene editing

The journalist, the director of the company and the imam enter the room. This is not an anecdote, but another day at the CrisprCon conference.

Two days in early June 2018, hundreds of scientists, industry representatives and public health officials from around the world filled the amphitheater of the Boston World Trade Center to familiarize themselves with the possibilities of the new favorite biologists toy for DNA editing: CRISPR . Topics were controversial - from the ethics of experiments on themselves, conducted by biohackers, to the possibility of creating global supervisory bodies. Often there was a stunned silence in the rooms. But that was the point of the conference - CrisprCon was deliberately conceived so as to take people out of the comfort zone.

“I will talk about what everyone is silent about,” said Antonio Cosme, a city farmer and community organizer from Detroit, who joined the expert group at the second annual CRISPR ethical conference to discuss fair access to editing technologies. genes. He was referring to the results of an audience survey that appeared before him in the tag cloud on the screen behind him, one of which was more than the others: “eugenics.”

“In Puerto Rico, where I'm from, there are still sterilized aunts and grandmothers, victims of laws passed in the 1930s,” said Cosme. “At such times, when ethnic nationalism covers Europe, and Trampovsky nationalism, the United States, the refusal to democratize such technologies is a clear threat to minorities that have no weight in the community.”
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Like any technology, the application of gene editing will be shaped based on the values ​​of the society applying it. Therefore, conversations about equal access to CRISPR are quickly becoming conversations about the redistribution of wealth and education, which over the past three decades have been increasingly concentrated in diminishing parts of the population. Today, 1% of the richest US families control a record 38.6% of the country's capital . There is a fear that CRISPR will not break the existing inequality, but will strengthen it.

Florsey Romero, working with the Harvard Personal Genetic Education Program , developing materials for young people of color, shows the inequality more clearly. In the audience, she asked to raise the hands of people with medical insurance. Hands raised almost everything. In most of the communities in which Romero works, about a third of people have insurance. “How can I tell about CRISPR if people do not have access to it, although there are treatments?” She asked the crowd. In the US, CRISPR-based therapy is just starting clinical trials, but pharmaceutical and insurance companies are already facing the problem of assigning this cost procedure. The first gene therapy, approved last year, now costs almost $ 500,000.

CrisprCon provides an excellent platform for raising such problems and highlighting embarrassing moral questions of a general nature. But now for the second year he lacked solutions to these problems. The most tangible examples come from the expert community studying ecotechnology - genetic methods of changing, controlling and even destroying species in the wild.

On stage, Dolphin Taizi discusses her work at the non-profit organization Target Malaria , which hopes to someday use CRISPR-based gene drive to rid Africa of malaria by destroying the mosquitoes that carry it. It took years to obtain the consent of the villages that will be the most influenced by such technologies, during which local residents who want to cooperate were hired, educational programs were created, and the consensus basis was adapted to local cultures. “We didn’t make decisions about how consent and activity should look like from our point of view,” said Taizi. “Instead, we asked people from each country to define these concepts for themselves”. The Target Malaria project is now being developed in Mali, Burkina Faso and Uganda, but so far not a single [modified] mosquito has yet been released.

This approach surprised the audience. Prior to the conference, a survey was released asking about who, in the opinion of people, should have the most control over decision making related to eco-technological research in the wild: scientists, governments, international organizations, or local communities? Most people chose scientists.

It upset another member of the board of experts, Kevin Ezvelt, an MIT scientist who donated technology to the world through CRISPR. His laboratory studied the use of technology on the Martas-Vinyard and Nantucket islands to instill immunity to Lyme disease in populations of white-legged mice, and to stop its spread among people. From the earliest days, scientists involved local health authorities in the project, conducted dozens of public hearings, at which they talked about the subject matter and design of the project. The Ezvelta group produced various options, including gene drive, but the public voted against mice with bacterial components, and chose an approach in which mice were grafted with genes for resistance to ticks and Lyme disease. Without a formal vote, not a single mouse was released. “Each steering committee had a special skeptic who was supposed to point out things that we hadn’t thought of, and make sure that we work with all care,” he said. “And if the community decides that it doesn’t need it, we will definitely not do it.”

Ezvelt and Taizi are beginning to draw up rules for the responsible use of gene drive and other environmental technologies, which future scientists and public health officials will be able to follow. Conference participants hope that next year they will be able to see something in this regard. Fabien Mondezir, a biology teacher from the Boston public school who took a sabbatical leave 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 for the time being, she is pleased with the fact that some of her students are interested in this issue.

Juni Arsen, who has just graduated from the Boston Latin Academy, plans to study biology and computer science. Someday she wants to be a pediatric endocrinologist to help other girls who, like her, suffer from polycystic ovary syndrome . Before the conference, she knew little about CRISPR. “It’s as if there’s a huge information explosion in my head,” she said. “I really like to follow the progress of this technology, especially in medical applications.”

She also learned what the journalist, the director, and the imam had in common. They all say that the most important thing in conversations about editing genes is not to talk, but to listen.