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Scientists Disagree About the Ethics and Governance of Human Germline Editing

January 18, 2019

Despite the appearance of agreement, scientists are not of the same mind about the ethics and governance of human germline editing. A careful review of public comments and published commentaries in top-tier science journals reveals marked differences in perspective

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Scientists Disagree About the Ethics and Governance of Human Germline Editing

Friday, January 18th, 2019

The current chapter in the debate about the societal and political implications of human germline editing took off nearly four years ago, in response to a laboratory experiment in which researchers in China used CRISPR technology on nonviable human embryos. In March 2015, an article titled “Don’t Edit the Human Germline,” coauthored by scientists and others working on somatic cell genome editing and associated with the Alliance for Regenerative Medicine, appeared in the “Comment” section of Nature. A week later, Science published a “Perspective” commentary coauthored by another group, most of them scientists convened by CRISPR codiscoverer Jennifer Doudna, under the title “A prudent path forward for genomic engineering and germline genetic modification.”

The first article described the “tenuous” therapeutic benefit, and the likely serious risks (including risks to future generations), of germline editing. The authors concluded that this technology was “dangerous and ethically unacceptable,” in part because “permitting even unambiguously therapeutic interventions could start us down a path towards non-therapeutic genetic enhancement.” They further suggested that “a voluntary moratorium in the scientific community could be an effective way to discourage human germline modification.”

In contrast, the second article stressed “the promise of curing genetic disease.” While it concluded that “there was an urgent need for open discussion of the merits and risks of human genome modification by a broad cohort of scientists, clinicians, social scientists, the general public, and relevant public entities and interest groups,” it asserted that the goal of such discussion would be to “enable pathways to responsible uses of this technology, if any, to be identified.” The authors recognized that it would be premature to move forward with human germline genome editing, but studiously avoided any use of the term moratorium.

…continue reading ‘Scientists Disagree About the Ethics and Governance of Human Germline Editing’

Image: By National Human Genome Research Institute (NHGRI) from Bethesda, MD, USA – CRISPR-Cas9 Editing of the Genome, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=52360100

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Hastings Center

The Future of Gene Editing — Toward Scientific and Social Consensus

January 17, 2019

On the day after Thanksgiving 2018, Jennifer Doudna, whose research on bacterial immune systems led to the gene-editing technique known as CRISPR, received a startling email from the Chinese scientist He Jiankui. “Babies born,” read the subject line. (with comments from our Jeffrey Kahn)

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The Future of Gene Editing — Toward Scientific and Social Consensus

Thursday, January 17th, 2019

On the day after Thanksgiving 2018, Jennifer Doudna, a biochemist at the University of California, Berkeley, whose research on bacterial immune systems led to the gene-editing technique known as CRISPR (for Clustered Regularly Interspaced Short Palindromic Repeats),¹ received a startling email from the Chinese scientist He Jiankui. “Babies born,” read the subject line. Though Doudna was previously unaware that He had been working to create the world’s first “CRISPR babies,” she had long worried that CRISPR-related research was leaping ahead of the consensus necessary to support its ethical use. In her memoir about gene editing,² Doudna describes a nightmare in which she is summoned by a pig-faced Hitler to describe the potential implications of the “amazing technology” she developed. But it’s the preoccupation of Doudna’s waking life, “that through a series of reckless, poorly conceived experiments, scientists would prematurely implement CRISPR without proper oversight or consideration of the risks,” that has proven more prescient.

Indeed, as the details of He’s experiment emerged, it quickly became impossible to separate the implications of the science from the ethics violations that had enabled it. He apparently attempted to edit the CCR5 gene in the germlines of two embryos. CCR5 is thought to be the major receptor through which HIV gains access to T cells, and He aimed to confer lifetime resistance to HIV. The magnitude of negligence was staggering — from the absence of clinical need (there are safe and effective ways to prevent HIV), to the uncertainty of harms (the twins may be at heightened risk from infections such as West Nile virus and influenza, and other potential consequences of both on- and off-target effects remain unknown), to a misleading consent process (the experiment was described as an “AIDS vaccine development project”), to a total lack of transparency (the data have not yet been published).³

…continue reading ‘The Future of Gene Editing — Toward Scientific and Social Consensus’

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NEJM

Severe Flu Raises Risk Of Birth Problems For Pregnant Women, Babies

January 11, 2019

Need another reason to get the flu shot if you’re pregnant? A study out this week shows that pregnant women with the flu who are hospitalized in an intensive care unit are four times more likely to deliver babies prematurely and four and a half times more likely to have a baby of low birth weight

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‘CRISPR Babies’ Scientist, ‘I’m Actually Doing Quite Well’

January 10, 2019

The Chinese scientist who shocked the world by announcing that twin girls had been born from embryos that he had created using genome editing has told two colleagues that, contrary to a flurry of reports that he is under house arrest and possibly even facing the death penalty, he is “actually doing quite well here.”

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‘CRISPR Babies’ Scientist, ‘I’m Actually Doing Quite Well’

Thursday, January 10th, 2019

In an email and a phone conversation, He Jiankui of Southern University of Science and Technology told the two scientists, who attended the “CRISPR babies” announcement at the International Summit on Human Genome Editing in Hong Kong, that he is able to read Western news reports about himself, including some earlier this week that he might be facing the death penalty for his work and that he is under armed guard and house arrest.

In fact, He told Stanford University neuroscientist and bioethicist Dr. William Hurlbut, he is staying in a university apartment in the city of Shenzhen “by mutual agreement” but is free to leave the apartment: He visits the gym in the building and takes walks outside, and his wife comes and goes for grocery runs and other errands.

…continue reading ”CRISPR Babies’ Scientist, ‘I’m Actually Doing Quite Well”

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STAT

Chinese Scientist Who Created CRISPR Babies Could Face the Death Penalty, Fellow Geneticist Warns

January 7, 2019

When He Jiankui went missing back in early December, we suspected big trouble ahead for the rogue scientist, but as Sarah Knapton reports in the Telegraph, his predicament is even worse than we thought

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Genetically Modified People Are Walking Among Us

December 3, 2018

And, so far, they’re just fine. America needs a sober debate about the pros and cons of Crispr instead of a paranoid ban on the technology

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We Need a Temporary Moratorium on Using Gene Editing to Create Babies

December 3, 2018

Paul Knoepfler writes, “The scientific community needs to take a firmer and clearer stance that making genetically modified babies is prohibited for the time being. A temporary moratorium specifically on implantation of gene-edited human embryos would achieve that with minimal risk of over-regulating research and no impact on in vitro research.”

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An Outsider Claimed to Make Genome-Editing History

November 27, 2018

And the world snapped to attention. Using YouTube rather than an academic journal, He claimed that with the aid of CRISPR, he had helped create the world’s first babies — twin girls born a few weeks ago — whose genomes had been edited as embryos

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Scientists Disagree About the Ethics and Governance of Human Germline Editing

Scientists Disagree About the Ethics and Governance of Human Germline Editing

The Future of Gene Editing — Toward Scientific and Social Consensus

The Future of Gene Editing — Toward Scientific and Social Consensus

Severe Flu Raises Risk Of Birth Problems For Pregnant Women, Babies

Severe Flu Raises Risk Of Birth Problems For Pregnant Women, Babies

‘CRISPR Babies’ Scientist, ‘I’m Actually Doing Quite Well’

‘CRISPR Babies’ Scientist, ‘I’m Actually Doing Quite Well’

Chinese Scientist Who Created CRISPR Babies Could Face the Death Penalty, Fellow Geneticist Warns

Chinese Scientist Who Created CRISPR Babies Could Face the Death Penalty, Fellow Geneticist Warns

Genetically Modified People Are Walking Among Us

Genetically Modified People Are Walking Among Us

We Need a Temporary Moratorium on Using Gene Editing to Create Babies

We Need a Temporary Moratorium on Using Gene Editing to Create Babies

An Outsider Claimed to Make Genome-Editing History

An Outsider Claimed to Make Genome-Editing History

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