Crispr fans fight for egalitarian access to gene editing

[Techno-Druid]

(Source)

A JOURNALIST, A soup exec, and an imam walk into a room. There’s no joke here. It’s just another day at CrisprCon.

On Monday and Tuesday, hundreds of scientists, industry folk, and public health officials from all over the world filled the amphitheater at the Boston World Trade Center to reckon with the power of biology’s favorite new DNA-tinkering tool: Crispr. The topics were thorny—from the ethics of self-experimenting biohackers to the feasibility of pan-global governance structures. And more than once you could feel the air rush right out of the room. But that was kind of the point. CrisprCon is designed to make people uncomfortable.

“I’m going to talk about the monkey in the room,” said Antonio Cosme, an urban farmer and community organizer in Detroit who appeared on a panel at the second annual conference devoted to Crispr’s big ethical questions to talk about equitable access to gene editing technologies. He referred to the results of an audience poll that had appeared moments before in a word cloud behind him, with one bigger than all the others: “eugenics.”

“In Puerto Rico, where I come from, there are still aunts and grandmas in our communities sterilized because of laws passed in the 1930s,” said Cosme. “In a time like this with ethnic nationalism sweeping Europe and Trump nationalism sweeping the US, not democratizing these kinds of technologies is a genuine threat to those of us who are minorities with less powerful in this society.”

Onstage, Delphine Thizy discussed her work with a nonprofit called Target Malaria, which hopes to one day use Crispr-powered gene drive to eradicate the disease in Africa by eliminating the mosquitoes that carry it. Getting consent of the villages that would be most affected has taken years of recruiting regional collaborators, creating educational programs, and adapting consensus frameworks to local cultures. “We didn’t make a decision about what consent and consensus looked like to us,” said Thizy. “Instead we asked people in each country to define it for themselves.” Target Malaria currently has projects in Mali, Burkina Faso, and Uganda, but no mosquitoes have yet been released.

It’s an approach that surprised the audience. Before the panel started, a poll went out asking people who should have the most decision-making control over ecotechnology research in the wild: scientists, national governments, international bodies, or local communities? Most people picked scientists.

That disappointed another panel member named Kevin Esvelt, the MIT scientist who introduced the world to Crispr-based gene drive. His lab has been exploring using it on the islands of Martha’s Vineyard and Nantucket to immunize the populations of white-footed mice against Lyme disease, to stop it from spreading to humans. And since its earliest days, the scientists have involved the local health departments and held dozens of public meetings that have informed the scope and shape of the project. Esvelt's group laid out options that included gene drive, but residents decided against mice with bacterial components, opting for an approach that only inserted mouse genes for tick and Lyme-resistance. And no modified mice will be released without a formal vote. “There’s an appointed skeptic to each steering committee who’s there to point out things we’re not thinking about make sure we’re proceeding with caution,” he said. “And if the community decides that they don’t want this, we will absolutely walk away from it.”

Esvelt and Thizy are starting to create roadmaps for the responsible use of gene drives and other ecotechnologies that other scientists and public health workers can follow in the future. That’s something CrisprCon attendees are hoping they’ll see even more of next year. Fabienne Mondesir, a Boston area public school biology teacher who’s taking a year sabbatical to lead engagement at Harvard’s pgEd program said that moving beyond just talk will take concrete tools people can bring back to their communities. But for now, she’s celebrating just getting some of her students in the room.

Junie Arcene, who’ll graduate this Sunday from Boston Latin Academy, plans to study biology and computer science at Northeastern in the fall. One day she wants to be a pediatric endocrinologist, to help other girls like her who suffer from polycystic ovarian disease. Before Monday she hadn’t heard much about Crispr. “It was like a huge explosion of information going off in my brain,” she said. “I’m excited to follow its progress, especially in the medical field.”

She also learned what a journalist, a soup exec and an imam all have in common. They all say the most important part of talking about gene editing isn’t talking at all. It’s listening.

Do you think CRISPR should be open to the poorer and more destitute of our society? Maybe through government-intervention or simply just a charitable consensus among certified and amateur scientists alike.

What do you think about the projects mentioned in this article like the gene drives? Where individuals of a species carrying diseases are eliminated on a genetic level, preventing diseases like malaria from spreading to humans.

I would personally like to see how gene drives could be used in conservation. Like in Central Asia, thousands of endangered saiga antelope have been dropping dead due to diseases by domestic sheep and goats. Eliminating these diseases and engineering resistances in the antelopes could save them from extinction.

[draynay]

What's the point in bolding two-thirds of the thing?

[Techno-Druid]

What's the point in bolding two-thirds of the thing?

I figured people would just skim through the article so I wanted to bold the most interesting things, but as it turns out, pretty much everything in the article was interesting

[Kathandira]

*snip*

If we invent something that will be a great boon to all of mankind, it should be made as accessible to all people as possible.

[Elegiac]

If we invent something that will be a great boon to all of mankind, it should be made as accessible to all people as possible.

This. We don't need to add on to current levels of inequality by creating distinct genetic castes of human by virtue of people's wealth.

[Freighter]

This. We don't need to add on to current levels of inequality by creating distinct genetic castes of human by virtue of people's wealth.

That already exists and it won't ever go away.

[Deleted]

I think it's great that we can eventually move to humanity 2.0

No more diseases and birth defects, people can potentially grow older, people can be stronger and more intelligent etc.

The current Human race has reached a cap, we cannot grow much further through evolution and certainly not at a rate that's required to keep up with our technological advancements. So this sees to be our future as a race: we craft our own future race.

[Elegiac]

That already exists and it won't ever go away.

Yes, because as we all know there is a distinct and artificial genetic difference between the wealthy and the poor. /s

Think before talk, comprends-tu?

[Freighter]

Yes, because as we all know there is a distinct and artificial genetic difference between the wealthy and the poor. /s

Think before talk, comprends-tu?

There is a genetic difference between the people who do well in society and those who do not. Doesn't matter whether it is artificial or not.

Your ability to perform is directly tied to your genes.

[Elegiac]

There is a genetic difference between the people who do well in society and those who do not.

One so obvious that it's lacking in supporting data and unable to make much of a difference in comparison to social and economic factors, right? /s

Doesn't matter whether it is artificial or not.

Your ability to perform is directly tied to your genes.

You really need to stop interjecting yourself into conversations where you can't grasp basic nomenclature.

[Freighter]

One so obvious that it's lacking in supporting data and unable to make much of a difference in comparison to social and economic factors, right? /s

You can continue believing your falsehoods, that doesn't make them true. It's no coincidence that it plays out as it does with who is on top and who is at the bottom.

[schwarzkopf]

It is a good idea for the future of humanity that IF gene editing for new children is available that the availability not be based on financial wealth.

[Elegiac]

You can continue believing your falsehoods, that doesn't make them true. It's no coincidence that it plays out as it does with who is on top and who is at the bottom.

Oh, okay.

I see they're still teaching social darwinism in South Korea.

[Elegiac]

I mean it may be nonsense but
As a gay man, every time I think about gene editing I think of how many parents around the world would like to "fix" their children from possibly becoming gay. And I cannot overcome this bias.

And if we're going down this social engineering path, I'd like to volunteer the idea that such a prejudice is indicative of a severe character defect that can only be removed from the gene pool by means of sterilisation.

Only fair, right?

[Techno-Druid]

I'm of the belief that gene editing choices by parents should only be for traits involving hereditary diseases and disorders alongside other potential medical issue.

Anything cosmetic should be entirely up the minor once they reach an age of competency. The exception being if your child inherits a cosmetic trait.

[Fargus]

You can continue believing your falsehoods, that doesn't make them true. It's no coincidence that it plays out as it does with who is on top and who is at the bottom.

So I guess Donald Trump has better genes than you, lol.

[Techno-Druid]

Indeed, just like some people can fantasize about a world where I don't exist I am sure I've imagined a world where people who are so predisposed to hate those different also did not exist. But I wouldn't really ever wish to act on it.
I mean I think the natural response is that we should ban some genes from being edited.
But which ones should those be?

We know there are a lot of genes that guide sexual and social behaviours. E.g. genes can decently predict a conservative bias.
What about genes that guide intelligence? Should we ban stupid? Can it in any way be ethical?

Ultimately this ends up being deontology vs utilitarianism clashing like most ethic issues are.

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Yet beyond diseases, how common is the discussion on the need to use gene editing to improve human intelligence so we can keep up with the world we are creating? Ultimately, what will stop people from doing it?

Intelligence is one thing that should also be looked into improving genetically. However, it should be more of a state-sponsored endeavor, to increase the intellect of humans nationwide and to an extent, globally.

[Independent voter]

My guess is that genetic diseases will be eradicated like polio, it might even be a UN effort, a van will show up at your village and it will scan your genes for bad things and remove them.

But not so much genetic enhancements like greater stamina or mental capacity, these might only be available to the rich. They not crucial for survival, more of a perk.

Playing around with your genes, like giving yourself florescent eyes, is probably going to be forbidden, you'll get jail time for tinkering.

[Elegiac]

Indeed, just like some people can fantasize about a world where I don't exist I am sure I've imagined a world where people who are so predisposed to hate those different also did not exist. But I wouldn't really ever wish to act on it.
I mean I think the natural response is that we should ban some genes from being edited.
But which ones should those be

Therein is the question; some sort of litmus test will need to be devised in order to determine which conditions prove "harmful" and which don't.

Or alternatively, we might simply need to ban prenatal genetic modification outright and instead put an emphasis on genetic modification therapy so that it can be undertaken by the patient with informed consent.

[Doctor Funkenstein]

No, it should only be available to the mega phramaceutical and biomedical industry. They've shown time and time again that they have humanities best interests at hand, and anything they discover or do with the technology will 1.) be affordable and easily accessible and 2.) never, ever thrown under the carpet because it would lower their profit margin.