genetics news

Societal and Ethical Impacts of Germline Genome Editing: How Can We Secure Human Rights?

Societal and Ethical Impacts of Germline Genome Editing: How Can We Secure Human Rights?

The CRISPR Journal, Vol 2, No 5

Jodi Halpern, Sharon E. O'Hara, Kevin W. Doxzen, Lea B. Witkowsky, and Aleksa L. Owen

“…While essential, public input and principles are not sufficient to ensure ethical uses of this technology. We propose an approach that relies not only on agreed-upon principles and a democratic process but requires a Human Rights Impact Assessment to evaluate the potential burdens that such biomedical interventions may place on human rights.”

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Don’t change your DNA at home, says America’s first CRISPR law

Don’t change your DNA at home, says America’s first CRISPR law

In ANYA, fictional scientist Dr. Seymour Livingston considers pursuing clandestine use of “gene-editing technology” to help a friend conceive. At the time of filming and now, that technology would be CRISPR.

As we wrote the script and filmed, our collaborators at PGED were working to educate legislators about genetics technologies, including CRISPR. Now the first law to directly regulate CRISPR has appeared in form of a California “human biohacking” bill demanding a warning on DYI genetic-engineering kits.

Article by Antonio Regalado for MIT Technology Review

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US Senators Call for International Guidelines for Germline Editing

US Senators Call for International Guidelines for Germline Editing

During the development of ANYA we had the privilege of attending several PGED congressional briefings. This is the first resolution I’ve noticed to come out in support of helping “forge an international consensus regarding the limits of ethical clinical use of genome-edited human embryos.”

Article by Jef Akst for the The Scientist

Image by istock.com

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Russian biologist plans more CRISPR-edited babies

Russian biologist plans more CRISPR-edited babies

ANYA takes a fictional look at a couple, a scientist, and a small community deciding whether to pursue gene-editing to have a healthy baby. In the real world, the race is on to produce — and to regulate — gene-edited babies.

When we filmed ANYA, this kind of gene-editing was still fiction. But by last November, when we were in post-production, news broke that a Chinese scientist had created twin “CRISPR babies.” Now, a Russian molecular biologist plans to implant gene-edited embryos in HIV+ volunteer mothers as early as the end of 2019. His goal is similar: to edit the embryos’ CCR5 genes in a way that reduces the risks of passing on HIV in utero.

This proposal comes at a time when most scientists believe that experiments on “gene-edited babies” should be banned until an international ethical framework is in place.

Read Nature’s 6/10/19 article on Dr. Denis Rebrikov’s controversial proposal.

Read Nature’s 6/11/19 Editorial urging the scientific community to intervene. (Image credit: Yorgos Nikas/SPL)

ANYA encourages viewers to join the worldwide debate now underway on how best to regulate gene editing in human sperm, eggs, and embryos.

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Genetic Medicine Is Poised to Create New Inequality. Here’s How to Fix It.

Genetic Medicine Is Poised to Create New Inequality. Here’s How to Fix It.

The databases used in genetics research consist overwhelmingly of genomes from people of European descent. To boost the participation of marginalized communities in genetic studies, doctors must first win back their trust.

Article by: Eva Armesen for Undark

Visual by: University of Michigan School for Environment and Sustainability / Flickr

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Gene-Edited Babies: What a Chinese Scientist Told an American Mentor

Gene-Edited Babies: What a Chinese Scientist Told an American Mentor

Investigations continue into Dr. He Jianku’s claim to have created the world’s first gene-edited babies. This article details responses from Dr. He’s American advisors when he was a postdoctoral fellow and grad student. The article raises a number of questions. Do faculty members — and academic institutions more generally — bear responsibility in the actions of the students they mentor? When does this obligation end? To whom should they report suspected ethical breaches or “corner cutting”? Especially when the students have moved on to other institutions or countries?

Article by Pam Belluck for the New York Times.

Image by Mark Schiefelbein, Associated Press: Dr. He’s team working on an embryo in a sperm injection microscope in Shenzhen, China.

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China Uses DNA to Track Its People, With the Help of American Expertise

China Uses DNA to Track Its People, With the Help of American Expertise

ANYA deals with unintended consequences of contemporary genetic technologies and broaches the related ethics.

Stories coming out in the news suggest we only scratched the surface of what’s coming. At the 2019 Festival of Genomics in London, I learned a new UK initiative to collect 5,000,000 human genomes for medical and insurance purposes. Norway and other countries have similar but smaller programs. More sequenced DNA means bigger more accurate data bases for personalized medicine, crime fighting, and other purposes.

From news coming out of China this week, it appears that mass collection of DNA has given us something else to worry about: surveillance, oppression, and thorny issues about how foreign corporations and academics participate in legitimizing activities that might be illegal or at least unethical at home.

Read the full article by Sui-Lee Wee for the NYT.

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Now You Can Sequence Your Whole Genome for Just $200

Now You Can Sequence Your Whole Genome for Just $200

HERE ARE A few things you can buy with $200: one bluetooth-controlled fire pit, 100 lab-grown Impossible White Castle sliders, access to the 6.4 billion base pairs that make up all the DNA coiled inside your cells. Veritas Genetics current promotion offers $199 genome sequencing (typically $999). (Meghan Molteni for Wired.)

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CRISPR-Babies in the News

CRISPR-Babies in the News

It’s been a week of fast and furious headlines as the news of the first “CRISPR babies” spreads since the original announcement by MIT Technology Review on 11/25/18. It’s been fascinating to watch how different media cover the story. It will be interesting to see if the public ultimately embraces the technological advance or meets it with a collective shrug. (Preliminary news analysis by ANYA filmmaker, anthropologist Carylanna Taylor).

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Genetically Modified People Are Walking Among Us

Genetically Modified People Are Walking Among Us

“It felt as if humanity had crossed an important line: In China, a scientist named He Jiankui announced on Monday that twins had been born in November with a gene that he had edited when they were embryos. But in some ways this news is not new at all. A few genetically modified people already walk among us.” Carl Zimmer (New York Times) goes on to remind us of a few of these cases, three-parent embryos through “mitochondrial replacement therapy.”

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We’re overdue for a society-wide conversation about this technology.

We’re overdue for a society-wide conversation about this technology.

In the Washington Post, J. Benjamin Hurlbut, Sheila Jasanoff,  and Krishanu Saha hold the scientific community partly responsible the gene-editing “experiment that was not supposed to happen.” It’s a helpful summary of where the news of the possible first "CRISPR babies” by Dr. He Jiankui (pictured) and his team fits into current scientific consensus or lack thereof.

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The worst-case scenarios of CRISPR gene editing, according to Hollywood

The worst-case scenarios of CRISPR gene editing, according to Hollywood

“A scientist in China has dominated headlines this week with the claim that his research team has successfully created the world’s first genetically-edited babies. If true, the experiment raises a lot of difficult ethical questions—ones that mainstream films and TV shows have been exploring for decades.

The topic of genetic engineering is so prevalent in pop culture that it’s practically a genre unto itself. At the heart of these science fiction depictions is the issue of whether the benefits of genetic engineering—that is, potentially curing diseases—outweigh the colossal risks, which range from eugenics to unintended mutations.” (Adam Epstein, Quartz)

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Chinese Scientist Claims to Use Crispr to Make First Genetically Edited Babies

Chinese Scientist Claims to Use Crispr to Make First Genetically Edited Babies

From the New York Times

By Gina Kolata, Sui-Lee Wee and Pam Belluck

“Ever since scientists created the powerful gene editing technique Crispr, they have braced apprehensively for the day when it would be used to create a genetically altered human being. Many nations banned such work, fearing it could be misused to alter everything from eye color to I.Q.”

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