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

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.

“A push to calculate a "genetic income score" using giant DNA databases raises a raft of ethical questions.”

Article by Megan Molteni, Wired.

Image by Lauren Joseph, Getty Images.

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.

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.)

“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.”

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.

Pictured: American biologist & Nobel laureate in medicine David Baltimore criticized a fellow scientist, physicist He Jiankui, who claims he has edited the genes human embryos, during the Second International Summit on Human Genome Editing at the University of Hong Kong. (NPR’s All Things Considered with Rob Stein)

Bioethicist and friend of ANYA, Jeantine Lunshof, and director of Harvard’s science & technology studies, Sheila Jasanoff spoke on WBUR Open Source with Chris Lydon talking gene-edited babies 11/29 @9pm. Listen to the full hour discussion.

This VERGE article by Angela Chen suggests that the so-called CRISPR babies may not be resistant to HIV as intended (and indeed may have a compromised immune system) and highlights several of the reasons why the scientific community is up in arms. We’ll know more if more data is released for peer review.

“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)

In this New York Times Op-Ed, professor of molecular medicine Dr. Eric J. Topol argues the time for gene-editing human embryos may came but “that time has not arrived.”

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.”

Looking to get up to speed fast on the news of the first gene-edited human embryo? Take a look at this accessible and informative overview for Bloomberg. My quick take on the subtext of John Lauerman’s article and Freya Ingrid Morales’s image? There are a lot of people in business and politics eager to make sense of this news.