CRISPR Babies: A Catalogue of Noteworthy Commentary and Analysis

L. Val Giddings, Ph.D.
Senior Fellow, Information Technology & Innovation Foundation

Note: This timeline was last updated on September 9, 2020.

On 25 November 2018, the story of the first CRISPR gene edited babies broke. It triggered a tsunami of reaction and media coverage. But it didn’t come out of nowhere. This timeline lists some of the significant events leading up to the breaking of the story, and what followed.

This is an eclectic compilation, not intended to be encyclopedic. We hope it will help illuminate events and their significance. It will be updated periodically, as events warrant.

See expanded CRISPR timeline here.

3 August 2020 Stuart A. Newman Engineering future people would be a disaster https://medium.com/@newman_15822/engineering-future-people-would-be-a-disaster-b44835d4af7f

“Modifying genes shows promise in curing medical conditions in sick people. Should it be used to make irreversible changes in people who don’t yet exist? Current research suggests that this would be a big mistake.”

30 July 2020 Vanessa Bates Ramirez A Year After Gene Therapy, Boys With Muscular Dystrophy Are Healthier and Stronger https://singularityhub.com/2020/07/30/a-year-after-getting-gene-therapy-boys-with-muscular-dystrophy-are-healthier-and-stronger/#.Xz1k28s_QTk.twitter

“Two and a half years ago, a study published in Science Advances detailed how the gene editing tool CRISPR/Cas-9 repaired genetic mutations related to Duchenne Muscular Dystrophy (DMD). The study was a proof of concept, and used induced pluripotent stem cells (iPSCs).

But now a similar treatment has not only been administered to real people, it has worked and made a difference in their quality of life and the progression of their disorder. Nine boys aged 6 to 12 who have been living with DMD since birth received a gene therapy treatment from pharmaceutical giant Pfizer, and a year later, 7 of the boys show significant improvement in muscle strength and function.”

15 July Nature Editors Mitochondrial genome editing: another win for curiosity-driven research — A promising biomedical tool began life as part of efforts to answer a different question https://www.nature.com/articles/d41586-020-02094-x.

“Microbiologist Joseph Mougous has plenty of reasons to study microscopic warfare. Understanding inter-bacterial conflict, for example, can help researchers to learn why some microbes make animals and humans ill. But, as so often in research, his attempts to understand one set of problems have led to a tool for something different. Mougous, at the University of Washington in Seattle, and his colleagues have described how an exceptional enzyme enabled them to edit the genomes of mitochondria, crucial energy-generating structures in many cells (B. Y. Mok et al. Nature http://doi.org/d3gd; 2020).”

5 July 2020 Jane Metcalfe Covid-19 Is Accelerating Human Transformation — Let’s Not Waste It — The Neobiological Revolution is here. Now’s the time to put lessons from the Digital Revolution to use. https://www.wired.com/story/covid-19-is-accelerating-human-transformation-dont-waste-it/.

“We have survived and evolved because we are alert to the dangers lurking everywhere. But Homo sapiens are unique among species in that we can also visualize a future and then make it happen. Without that ability, we wouldn’t dare leave our caves. People at the forefront of life sciences are showing us enormous potential technological, public health, environmental, financial, and social benefits. What we imagine becomes what we build. It’s time to outline possible futures people can rally for rather than fear. Let’s not let the coronavirus crisis go to waste.”

1 July 2020, Paul Knoepfler CRISPR often damages human embryo chromosomes https://ipscell.com/2020/07/crispr-damages-human-embryo-chromosomes/

“Three new studies reported in preprints all show severe DNA damage to human embryos from CRISPR a surprisingly high percentage of the time including in some cases loss of heterozygosity (LOH). Anywhere from about a quarter to half of CRISPR’d embryos exhibited major genome damage.”

26 June Amanda Heidt CRISPR Gene Editing Prompts Chaos in DNA of Human Embryos — Three studies identify unintended consequences of gene editing in human embryos, including large deletions and reshuffling of DNA. https://www.the-scientist.com/news-opinion/crispr-gene-editing-prompts-chaos-in-dna-of-human-embryos-67668#.XwKh9WPsFPM.twitter

“The ability of CRISPR gene-editing technology to safely modify human embryos has been cast into doubt after several recent papers described massive disruptions to DNA in embryos subjected to editing.”

23 June 2020 Rob Stein A Year In, 1st Patient To Get Gene Editing For Sickle Cell Disease Is Thriving https://www.npr.org/sections/health-shots/2020/06/23/877543610/a-year-in-1st-patient-to-get-gene-editing-for-sickle-cell-disease-is-thriving

“Like millions of other Americans, Victoria Gray has been sheltering at home with her children as the U.S. struggles through a deadly pandemic, and as protests over police violence have erupted across the country. But Gray is not like any other American. She’s the first person with a genetic disorder to get treated in the United States with the revolutionary gene-editing technique called CRISPR. And as the one-year anniversary of her landmark treatment approaches, Gray has just received good news: The billions of genetically modified cells doctors infused into her body clearly appear to be alleviating virtually all the complications of her disorder, sickle cell disease.”

5 March, 2020 Joan Conrow Top European science council demands ‘radical’ GMO regulatory reform https://allianceforscience.cornell.edu/blog/2020/03/top-european-science-council-demands-radical-gmo-regulatory-reform/ and https://t.co/HnfNO9YSzH?amp=1

“A top European science council calling is demanding a “radical reform of the legal framework” that regulates genetically modified organisms (GMOs) in the European Union. In a strongly worded commentary, the European Academies Science Advisory Council (EASAC) said the current EU regulations are “no longer fit for purpose” and warned of serious ramifications if the rules are not eased to allow new plant breeding techniques to move forward.”

4 March, 2020 Jeff Akst First Patient Receives In Vivo CRISPR Editing https://www.the-scientist.com/news-opinion/first-patient-receives-in-vivo-crispr-editing-67222

Doctors in Oregon delivered the gene editing machinery behind the retina in hopes of treating an inherited form of blindness, according to the companies that developed the therapy. https://www.the-scientist.com/news-opinion/first-patient-receives-in-vivo-crispr-editing-67222. “Cambridge, Massachusetts–based Editas Medicine and Dublin-based Allergan announced today (March 4) that doctors at the Casey Eye Institute of Oregon Health & Science University in Portland used CRISPR gene editing inside a patient for the first time. They are attempting to treat an inherited form of blindness called Leber congenital amaurosis, the Associated Press reports. The scientists say they will know within a few weeks if the treatment is working and safe, and plan to test it on additional patients if so.”

4 March, 2020 In A 1st, Scientists Use Revolutionary Gene-Editing Tool To Edit Inside A Patient https://www.npr.org/sections/health-shots/2020/03/04/811461486/in-a-1st-scientists-use-revolutionary-gene-editing-tool-to-edit-inside-a-patient

“For the first time, scientists have used the gene-editing technique CRISPR to try to edit a gene while the DNA is still inside a person’s body. The groundbreaking procedure involved injecting the microscopic gene-editing tool into the eye of a patient blinded by a rare genetic disorder, in hopes of enabling the volunteer to see. They hope to know within weeks whether the approach is working and, if so, to know within two or three months how much vision will be restored.”

6 February, 2020 Ed Cara U.S. Trial finds CRISPR-edited cells are safe in cancer patients https://gizmodo.com/u-s-trial-finds-crispr-edited-cells-are-safe-in-cancer-1841495203?utm_medium=sharefromsite&utm_source=gizmodo_twitter.

“researchers say they’ve shown that CRISPR-edited immune cells can be safely given to cancer patients and survive for up to nine months — a finding that may signal CRISPR’s future as part of an emerging cancer treatment known as immunotherapy.”

5 February, 2020 Hannah Kuchler CRISPR pioneer Jennifer Doudna opposes germline-editing moratorium: ‘We’re going to have to figure it out’ https://www.ft.com/content/6d063e48-4359-11ea-abea-0c7a29cd66fe.

“In November 2018, Doudna received an email from Chinese scientist He Jiankui, saying he planned to announce the birth of Crispr-edited twins at an upcoming conference in Hong Kong. The children were engineered without the knowledge of the international scientific community, whose leading members — among them Doudna — had been pressing for a moratorium on germline editing. Doudna declined to sign another call for a moratorium after the revelation of the Chinese babies, saying that there needs instead to be appropriate regulation of gene editing. In A Crack in Creation, a book she co-authored in 2017, she wondered whether we would ever have the intellectual and moral capacity to make decisions about germline editing. I ask if she still feels that way. “I would say my feeling today is that, like it or not, we’re going to have to figure it out,” she says.”

5 February Hannah Kuchler CRISPR pioneer Jennifer Doudna opposes germline-editing moratorium: ‘We’re going to have to figure it out’ https://www.ft.com/content/6d063e48-4359-11ea-abea-0c7a29cd66fe.

“In November 2018, Doudna received an email from Chinese scientist He Jiankui, saying he planned to announce the birth of Crispr-edited twins at an upcoming conference in Hong Kong. The children were engineered without the knowledge of the international scientific community, whose leading members — among them Doudna — had been pressing for a moratorium on germline editing. Doudna declined to sign another call for a moratorium after the revelation of the Chinese babies, saying that there needs instead to be appropriate regulation of gene editing. In A Crack in Creation, a book she co-authored in 2017, she wondered whether we would ever have the intellectual and moral capacity to make decisions about germline editing. I ask if she still feels that way. “I would say my feeling today is that, like it or not, we’re going to have to figure it out,” she says.”

3 January 2020 David Cyranoski What CRISPR-baby prison sentences mean for research — Chinese court sends strong signal by punishing He Jiankui and two colleagues https://www.nature.com/articles/d41586-020-00001-y?utm_source=twt_nnc&utm_medium=social&utm_campaign=naturenews.

“A Chinese court has sentenced He Jiankui, the biophysicist who announced that he had created the world’s first gene-edited babies, to three years in prison for “illegal medical practice”, and handed down shorter sentences to two colleagues who assisted him. The punishments put to rest speculation over whether the Chinese government would bring criminal charges for an act that shocked the world, and are likely to deter others from similar behaviour, say Chinese scientists. There has been much speculation about whether other scientists would follow in He‘s footsteps, especially given the ease of using the most popular gene-editing tool, CRISPR-Cas9. But the punishments are “definitely a deterrent to similar misconduct in China”, says Wei Wensheng, a gene-editing researcher at Peking University in Beijing.”

30 December 2019 Zaobao.com He Jiankui illegally edits human embryo genes, sentenced to three years in prison https://www.zaobao.com.sg/realtime/china/story20191230-1017060.

“The “gene-edited baby” case was publicly sentenced in the first instance of the Nanshan District People’s Court in Shenzhen today. The three defendants, He Jiankui, Zhang Renli, and Qin Jinzhou, jointly executed the human embryo gene editing and reproductive medical activities for reproductive purposes, which constituted the crime of illegal medical practice, and were each held criminally responsible according to law… He Jiankui was sentenced to three years’ imprisonment and a fine of 3 million yuan (RMB, the same below, about S $ 600,000)… and barred [him] from engaging in human assisted reproductive technology services for life.”

16 December Andy Beer Australia/New Zealand to clarify rules on NBTs https://agrow.agribusinessintelligence.informa.com/AG032138/AustraliaNew-Zealand-to-clarify-rules-on-NBTs.

“Food Standards Australia New Zealand (FSANZ) is to propose changes to the Food Standards Code to clarify terminology related to food derived from new breeding techniques (NBTs).”

3 December Innovative Genomics Institute CRISPR Consensus? Public debate and the future of genome editing in human reproduction https://www.youtube.com/watch?v=SFrKjItaWGc&list=PL29W0b7TmEDwivPylKcfGUinGBihQD_J8

“On October 26th, over 20 speakers from diverse backgrounds, expertise, and countries of origin, gathered at UC Berkeley, to discuss the critical question of public participation in decision-making about heritable genome editing. Watch this set of videos continue this important conversation!”

3 December Antonio Regalado China’s CRISPR babies: Read exclusive excerpts from the unseen original research He Jiankui’s manuscript shows how he ignored ethical and scientific norms in creating the gene-edited twins Lulu and Nana https://www.technologyreview.com/s/614764/chinas-crispr-babies-read-exclusive-excerpts-he-jiankui-paper/.

“Earlier this year a source sent us a copy of an unpublished manuscript describing the creation of the first gene-edited babies, born last year in China. Today, we are making excerpts of that manuscript public for the first time. Titled “Birth of Twins After Genome Editing for HIV Resistance,” and 4,699 words long, the still unpublished paper was authored by He Jiankui, the Chinese biophysicist who created the edited twin girls. A second manuscript we also received discusses laboratory research on human and animal embryos. The metadata in the files we were sent indicate that the two draft papers were edited by He in late November 2018 and appear to be what he initially submitted for publication… After consideration by at least two prestigious journals, Nature and JAMA, his research remains unpublished. The text of the twins paper is replete with expansive claims of a medical breakthrough that can “control the HIV epidemic.” It claims “success” — a word used more than once — in using a “novel therapy” to render the girls resistant to HIV. Yet surprisingly, it makes little attempt to prove that the twins really are resistant to the virus. And the text largely ignores data elsewhere in the paper suggesting that the editing went wrong.”

20 November Human germline editing needs one message — Science academies and the World Health Organization must act in unison. https://www.nature.com/articles/d41586-019-03525-0.

“In 2018, the World Health Organization (WHO) set up an independent expert panel to advise on the oversight and governance of human genome editing. A separate international commission on the clinical use of human germline genome editing gathered for its second meeting in London last week. This commission was established by the US National Academy of Science, the US National Academy of Medicine and Britain’s Royal Society, to recommend standards and criteria for germline genome editing. Both will report next year, and the commission’s report will feed into the WHO process. But the WHO panel has already recommended setting up a public registry for genome-editing experiments. It has also made an interim recommendation that “it would be irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing”, which has been accepted by the agency’s leadership. The international commission has yet to say what it thinks, but it would make little sense for it to disagree. It isn’t entirely clear why separate initiatives are needed, and it is unfortunate that representatives of people with disabilities are not part of the decision-making process. However, it isn’t too late to rectify these issues, and the two initiatives must, in the end, converge.”

15 November Jennifer Doudna CRISPR’s unwanted anniversary https://science.sciencemag.org/content/366/6467/777.

“There are key moments in the history of every disruptive technology that can make or break its public perception and acceptance. For CRISPR-based genome editing, such a moment occurred 1 year ago — an unsettling push into an era that will test how society decides to use this revolutionary technology. In November 2018, at the Second International Summit on Human Genome Editing in Hong Kong, scientist He Jiankui announced that he had broken the basic medical mantra of “do no harm” by using CRISPR-Cas9 to edit the genomes of two human embryos in the hope of protecting the twin girls from HIV. His risky and medically unnecessary work stunned the world and defied prior calls by my colleagues and me, and by the U.S. National Academies of Sciences and of Medicine, for an effective moratorium on human germline editing. It was a shocking reminder of the scientific and ethical challenges raised by this powerful technology. Once the details of He’s work were revealed, it became clear that although human embryo editing is relatively easy to achieve, it is difficult to do well and with responsibility for lifelong health outcomes.”

18 October David Cyranoski Russian ‘CRISPR-baby’ scientist has started editing genes in human eggs with goal of altering deaf gene — Denis Rebrikov also told Nature that he does not plan to implant gene-edited embryos until he gets regulatory approval https://www.nature.com/articles/d41586-019-03018-0?utm_source=twt_nnc&utm_medium=social&utm_campaign=naturenews&sf221727095=1.

“Russian biologist Denis Rebrikov has started gene editing in eggs donated by women who can hear to learn how to allow some deaf couples to give birth to children without a genetic mutation that impairs hearing. The news, detailed in an e-mail he sent to Nature on 17 October, is the latest in a saga that kicked off in June, when Rebrikov told Nature of his controversial intention to create gene-edited babies resistant to HIV using the popular CRISPR tool.”

14 October Max Planck Gesellschaft Discussion paper on genome editing — Max Planck Society rejects interference with the human germline.

https://translate.google.com/translate?sl=auto&tl=en&u=https%3A%2F%2Fwww.mpg.de%2F13997972%2Fdiskussionspapier-genom-editierung.

“As an organization of basic research, the Max Planck Society bears a special responsibility for the use of new scientific techniques for the benefit of humans and the environment. The Ethics Council of the Max Planck Society has therefore prepared a discussion paper on so-called genome editing, which highlights the potentials and risks of this method. In the paper, the Ethics Council concludes that the various uses of the technology in plant breeding, medicine or pest control bring their own ethical issues. These must be answered individually. For example, the Max Planck Society is aware of the implications of inheritable artificial mutations, such as those caused by genome editing of germ line cells. For the time being, therefore, it will not conduct any research on the genetic modification of germline cells. Instead, she wants to participate in the discussion based on the latest scientific findings and the development of international standards.”

18 October David Cyranoski Russian ‘CRISPR-baby’ scientist has started editing genes in human eggs with goal of altering deaf gene — Denis Rebrikov also told Nature that he does not plan to implant gene-edited embryos until he gets regulatory approval https://www.nature.com/articles/d41586-019-03018-0?utm_source=twt_nnc&utm_medium=social&utm_campaign=naturenews&sf221727095=1.

“Russian biologist Denis Rebrikov has started gene editing in eggs donated by women who can hear to learn how to allow some deaf couples to give birth to children without a genetic mutation that impairs hearing. The news, detailed in an e-mail he sent to Nature on 17 October, is the latest in a saga that kicked off in June, when Rebrikov told Nature of his controversial intention to create gene-edited babies resistant to HIV using the popular CRISPR tool.”

25 September Sharon Begley ‘I just want to live’: California man pleads with scientists around the world to ‘CRISPR me’ https://www.statnews.com/2019/09/25/plea-to-scientists-crispr-me/.

“For the last few months, he has been asking scientists and companies if they’ll give him the biological supplies he would need — he isn’t always clear on what those might be — to receive the tardigrade gene, using CRISPR or some other technology to slip it into his cells. Hashimoto’s experiment, Vohryzek told STAT, demonstrates “that I’m not proposing something insane. … I want to participate in [the] use of CRISPR on full genome gene insertion.””

11 September Michelle Cortez Chinese Scientists Edit DNA in Attempt to Cure Man’s Cancer, HIV https://www.bloomberg.com/news/articles/2019-09-11/chinese-scientists-edit-dna-in-attempt-to-cure-man-s-cancer-hiv.

“Chinese researchers safely treated a man with leukemia and HIV using gene-edited stem cells, a step forward in a field that was shaken last year when another Chinese scientist used the same technology to create the world’s first genetically-edited babies. The man’s medical case, published Wednesday in the New England Journal of Medicine, is the first detailed report in a major academic journal of how doctors are using the experimental tool Crispr to manipulate the DNA of a living patient in an effort to cure disease… “This is a green light for the whole field of gene editing,” Carl June, a pioneer in the use of gene therapy to treat cancer and HIV at the University of Pennsylvania, said in an interview. He published a companion piece in the journal.”

2 August Jon Cohen, Nirja Desai With its CRISPR revolution, China becomes a world leader in genome editing https://www.sciencemag.org/news/2019/08/its-crispr-revolution-china-becomes-world-leader-genome-editing?utm_campaign=ScienceNow&utm_source=JHubbard&utm_medium=Facebook.

“For many people, CRISPR plus China equals the biophysicist He Jiankui, who infamously used the genome editor last year to alter the DNA of two human embryos that would become twin girls. Before his announcement, He was little-known within the country’s CRISPR community, which has grown rapidly and is now challenging — and by some measures surpassing — the United States in its use of the powerful tool (see graphics below)… Although He’s work lies far outside the mainstream, his actions haunt China. So does another, largely untold aspect of his rise and fall: the role that others, in China and abroad, played in the runup to his experiment. He shared his plans widely, and although several confidants tried to dissuade him, some were more encouraging.”

1 August Jon Cohen The untold story of the ‘circle of trust’ behind the world’s first gene-edited babies https://www.sciencemag.org/news/2019/08/untold-story-circle-trust-behind-world-s-first-gene-edited-babies also https://www.technologyreview.com/s/614051/crispr-baby-maker-explored-starting-a-business-in-designer-baby-tourism/.

“Because the Chinese government has revealed little and He is not talking, key questions about his actions are hard to answer. Many of his colleagues and confidants also ignored Science’s requests for interviews. But Ryan Ferrell, a public relations specialist He hired, has cataloged five dozen people who were not part of the study but knew or suspected what He was doing before it became public. Ferrell calls it He’s circle of trust. That circle included leading scientists — among them a Nobel laureate — in China and the United States, business executives, an entrepreneur connected to venture capitalists, authors of the NASEM report, a controversial U.S. IVF specialist who discussed opening a gene-editing clinic with He, and at least one Chinese politician. “He had an awful lot of company to be called a ‘rogue,’” says geneticist George Church, a CRISPR pioneer at Harvard University who was not in the circle of trust and is one of the few scientists to defend at least some aspects of He’s experiment.”

30 July Megan Molteni The World Health Organization Says No More Gene-Edited Babies https://www.wired.com/story/the-world-health-organization-says-no-more-gene-edited-babies/.

“THE WORLD’S LARGEST public health authority has weighed in with the most authoritative statement yet on the use of Crispr to alter the DNA of human babies. Eight months after a rogue Chinese scientist revealed he had secretly created the world’s first gene-edited children, the World Health Organization is asking countries to put a stop to any experiments that would lead to the births of more gene-edited humans. On Friday, the WHO’s director-general put out a statement urging “that regulatory authorities in all countries should not allow any further work in this area until its implications have been properly considered.”

29 July Rob Stein Sickle Cell Patient Reveals Why She Is Volunteering For Landmark Gene-Editing Study https://www.npr.org/sections/health-shots/2019/07/29/744826505/sickle-cell-patient-reveals-why-she-is-volunteering-for-landmark-gene-editing-st

“Victoria Gray is waiting patiently in a hospital room at the Sarah Cannon Research Institute in Nashville. “It’s a good time to get healed,” she says. The 34-year-old from Forest, Miss., has struggled with sickle cell disease throughout her life. Gray is at the hospital because she volunteered for one of the most anticipated medical experiments in decades: the first attempt to use the gene-editing technique CRISPR to treat a genetic disorder in the U.S. She’s the first patient ever to be publicly identified as being involved in such a study. “I always had hoped that something will come along,” Gray says in an exclusive interview with NPR. “It is just amazing how far things have come. I just want to kind of help bring awareness to this disease and let other people know that there is hope.””

27 June Hope Henderson From Battlefields to Cancer Wards: CRISPR to Combat Radiation Sickness https://innovativegenomics.org/news/crispr-to-combat-radiation/. See also https://www.darpa.mil/news-events/2019-06-27.

“…an area of major unmet medical need [is] acute radiation sickness, or ARS. Today, the IGI announces funding for a massively ambitious project: using CRISPR-Cas9 to combat ARS. The goal of this project is to find genes that, when turned on or off, protect against ARS, and use CRISPR-Cas9 to temporarily and reversibly change the expression of these genes. Much like getting a vaccine to protect against the flu, scientists aim to produce a single-dose genetic medicine that could be given as a shot or pill that would preemptively protect against radiation. Scientists also aim to develop a post-exposure treatment. Ultimately, the researchers hope to create a genetic medicine that they can take all the way to clinical trials in humans.”

June 13 Jon Cohen Russian geneticist answers challenges to his plan to make gene-edited babies https://www.sciencemag.org/news/2019/06/russian-geneticist-answers-challenges-his-plan-make-gene-edited-babies

“In a bold rejection of the widespread sentiment — and regulations in many countries — that no one should alter the genome of a human embryo and transfer it to a woman, Russian geneticist Denis Rebrikov last week went public with his plans to become the second researcher to cross this red line. “We can’t stop progress with words on paper,” Rebrikov told ScienceInsider yesterday, when asked about international efforts to ban such research.” Excellent analysis here https://twitter.com/GaetanBurgio/status/1139832881243574273.

10 June David Cyranoski Russian biologist plans more CRISPR-edited babies — The proposal follows a Chinese scientist who claimed to have created twins from edited embryos last year https://www.nature.com/articles/d41586-019-01770-x.

“Molecular biologist Denis Rebrikov is planning controversial gene-editing experiments in HIV-positive women. A Russian scientist says he is planning to produce gene-edited babies, an act that would make him only the second person known to have done this. It would also fly in the face of the scientific consensus that such experiments should be banned until an international ethical framework has agreed on the circumstances and safety measures that would justify them. Molecular biologist Denis Rebrikov has told Nature he is considering implanting gene-edited embryos into women, possibly before the end of the year if he can get approval by then.”

28 May Sharon Begley Fertility clinics around the world asked ‘CRISPR babies’ scientist for how-to help https://www.statnews.com/2019/05/28/fertility-clinics-asked-crispr-babies-scientist-for-how-to-help/.

“The condemnation of the Chinese scientist who created the world’s first genome-edited babies last year was far from universal: A fertility clinic in Dubai emailed He Jiankui on December 5 — just a week after he announced the births — asking if he could teach its clinicians “CRISPR gene editing for Embryology Lab Application.”

23 May Max Planck Society Max Planck Society publishes statement on genome editing — Scientists reject altering human germline at the present time https://www.mpg.de/13509523/genome-editing-statement-mpg.

“The rapid development of CRISPR/Cas technology and other genome-editing techniques raises a variety of scientific, legal and ethical questions. The Max Planck Society has decided to contribute the expertise of its scientists to foster scientific and societal debate on the subject. It has therefore formulated its position on genome editing in a position paper. The paper considers the current state of our knowledge insufficient to justify, among other things, modifying the human germline. It also calls for European legislation to be adapted to the current state of research and for plants with edited genetic material to be no longer be classified as genetically modified if they imitate the natural process of mutagenesis. “The position paper reflects the great potential of genome editing and the ethical and legal challenges it poses. The Max Planck Society wants to show how science can use this potential responsibly in order to gain important insights for the benefit of society, especially with regard to new applications in the fields of medicine and nutrition,” says Martin Stratmann, President of the Max Planck Society.”

21 May Washington Post Editorial Board We have the technology to customize our babies. It needs regulation. https://www.washingtonpost.com/opinions/global-opinions/we-have-the-technology-to-customize-our-babies-it-needs-regulation/2019/05/21/ce6c554c-50b0-11e9-88a1-ed346f0ec94f_story.html?utm_term=.e1af3af3f30a.

“A commentary in the journal Nature has called for a global, temporary moratorium on clinical uses of human germline editing, defined as “changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children.” The moratorium could be hard to enforce, but it would offer a breather to sort out scientific and ethical issues… The authors suggest that a goal might be some kind of international research framework. Genome editing ultimately can affect all humankind, but any regulation must be sensitive to individual nations and societies — not an easy task.”

May 10 Preetika Rana (paywalled) How a Chinese Scientist Broke the Rules to Create the First Gene-Edited Babies https://www.wsj.com/articles/how-a-chinese-scientist-broke-the-rules-to-create-the-first-gene-edited-babies-11557506697 Dr. He Jiankui, seeking glory for his nation and justice for HIV-positive parents, kept his experiment secret, ignored peers’ warnings and faked a test.

“Dr. He, now 35, left behind the mystery of what motivated him to defy his field’s widely held ethical principles, how he carried out his trial in stealth, why nobody stopped him — and why he was so stunned by the backlash. A picture of just how far the scientist went to fulfill his dream emerges from a Wall Street Journal examination of his notes, emails, voice memos, clinical-trial documents and from interviews with people who knew him, some of whom were familiar with his trial, and the birth of the babies.”

April 17 Sharon Begley As calls mount to ban embryo editing with CRISPR, families hit by inherited diseases say, not so fast. https://www.statnews.com/2019/04/17/crispr-embryo-editing-ban-opposed-by-families-carrying-inherited-diseases/.

““It’s easy to get on your high horse when you’re not in our position,” she said. “If editing an IVF embryo is the best option to mitigate the pain that a child would otherwise suffer, then give us the choice.””

April 16 Rob Stein First U.S. Patients Treated With CRISPR As Human Gene-Editing Trials Get Underway. https://www.npr.org/sections/health-shots/2019/04/16/712402435/first-u-s-patients-treated-with-crispr-as-gene-editing-human-trials-get-underway.

“…a U.S. CRISPR study that had been approved for cancer at the University of Pennsylvania in Philadelphia has finally started. A university spokesman on Monday confirmed for the first time that two patients had been treated using CRISPR. One patient had multiple myeloma, and one had sarcoma. Both had relapsed after undergoing standard treatment.”

14 April Pam Belluck Gene-Edited Babies: What a Chinese Scientist Told an American Mentor. https://www.nytimes.com/2019/04/14/health/gene-editing-babies.html?smid=tw-nytimesscience&smtyp=cur.

““Prof. Stephen Quake provided instructions to the preparation and implementation of the experiment, the publication of papers, the promotion and news release, and the strategies to react after the news release,” he alleged in letters obtained by The New York Times. Dr. Quake’s actions, he asserted, “violated the internationally recognized academic ethics and codes of conduct, and must be condemned.” Dr. Quake denied the allegations in a lengthy interview, saying his interaction with Dr. He, who was a postdoctoral student in his lab eight years ago, had been misinterpreted.”

4 April Ron Bailey Gene-Edited Kids Can Be Safely Released into the Wild Human Gene Pool — Despite bioethical handwringing, they pose no special risks to future generations. https://reason.com/blog/2019/04/04/gene-edited-kids-can-be-safely-released.

“…No future generation (or individual for that matter) has ever given their consent to be born, much less to be born with the specific complement of genes they carry. But are the risks of passing along edited genes to future generations really incalculable? No. Considering how natural genetic mutations get passed down to future generations sheds a bright light on just how big a risk to future generations the twins’ edited genes are. And it turns out the reproductive risks of edited genes are essentially no different than the risks associated with naturally mutated genes.”

13 March Eric S. Lander, Françoise Baylis, Feng Zhang, Emmanuelle Charpentier, Paul Berg, Catherine Bourgain, Bärbel Friedrich, J. Keith Joung, Jinsong Li, David Liu, Luigi Naldini, Jing-Bao Nie, Renzong Qiu, Bettina Schoene-Seifert, Feng Shao, Sharon Terry, Wensheng Wei & Ernst-Ludwig Winnacker Adopt a moratorium on heritable genome editing -Eric Lander, Françoise Baylis, Feng Zhang, Emmanuelle Charpentier, Paul Berg and specialists from seven countries call for an international governance framework. https://www.nature.com/articles/d41586-019-00726-5.

“We call for a global moratorium on all clinical uses of human germline editing — that is, changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children. By ‘global moratorium’, we do not mean a permanent ban. Rather, we call for the establishment of an international framework in which nations, while retaining the right to make their own decisions, voluntarily commit to not approve any use of clinical germline editing unless certain conditions are met. To begin with, there should be a fixed period during which no clinical uses of germline editing whatsoever are allowed. As well as allowing for discussions about the technical, scientific, medical, societal, ethical and moral issues that must be considered before germline editing is permitted, this period would provide time to establish an international framework.”

26 February David Cyranoski The CRISPR-baby scandal: what’s next for human gene-editing? As concerns surge after a bombshell revelation, here are four questions about this fast-moving field. https://www.nature.com/articles/d41586-019-00673-1.

In the three months since He Jiankui announced the birth of twin girls with edited genomes, the questions facing the scientific community have grown knottier. By engineering mutations into human embryos, which were then used to produce babies, He leapt capriciously into an era in which science could rewrite the gene pool of future generations by altering the human germ line. He also flouted established norms for safety and human protections along the way. There is still no definitive evidence that the biophysicist actually succeeded in modifying the girls’ genes — or those of a third child expected to be born later this year. But the experiments have attracted so much attention that the incident could alter research for years to come.

25 February Jane Qiu Chinese government funding may have been used for ‘CRISPR babies’ project, documents suggest. https://www.statnews.com/2019/02/25/crispr-babies-study-china-government-funding/.

“BEIJING — Three government institutions in China, including the nation’s science ministry, may have funded the “CRISPR babies” study that led to the birth last November of two genetically modified twin girls, according to documents reviewed by STAT. These findings appear to support what many researchers inside and outside China have suspected since scientist He Jiankui revealed the births in late November, sparking international condemnation for violating scientific guidelines against the use of gene-edited human embryos to start pregnancies. “I don’t think He Jiankui could have done it without the government encouragement to press ahead” with research they thought would merit a Nobel Prize, said Jing-Bao Nie, a bioethicist at the University of Otago in New Zealand. If the documents are correct, they would suggest China is supporting research that the U.S. and other countries consider unethical, and raise doubts about the preliminary conclusion of a government investigation that He acted mostly on his own.”

25 February Bailey Lipschultz Crispr Infuses First Human In Landmark Gene-Editing Study. https://finance.yahoo.com/news/crispr-infuses-first-human-landmark-132242277.html.

“Crispr Therapeutics and partner Vertex Pharmaceuticals Inc. said on Monday morning that the first patient in a trial using CTX001, a therapy created using Crispr technology, as a treatment for the rare blood disease, beta thalassemia, received the one-time medicine. The pair also announced the enrollment of the first patient has started in a parallel study for the medicine in sickle-cell disease with the first dosing on track for mid-year.”

22 February Jan Osterkamp GMO BABIES IN CHINA: feared side effects of CRISPR human experiment — The genes that have been manipulated in the Chinese “CRISPR babies” also have a function for the brain, as experiments on mice prove. Whether this has consequences for the girls is completely unclear. https://www.spektrum.de/news/nebenwirkungen-des-crispr-menschenversuchs-befuerchtet/1625854.

“There is a lack of verifiable scientific facts — but there is reason to believe that targeted gene manipulation in children may not have had the desired effect. This is partly due to the choice of He manipulated gene CCR5, researchers from Alcino Silva, University of California, Los Angeles, report: If this gene changes, it may affect basic brain functions, as experiments in mice suggest.”

21 February Antonio Regalado China’s CRISPR twins might have had their brains inadvertently enhanced: New research suggests that a controversial gene-editing experiment to make children resistant to HIV may also have enhanced their ability to learn and form memories. https://www.technologyreview.com/s/612997/the-crispr-twins-had-their-brains-altered/.

Paywalled.

12 February Carolyn Wilke Preliminary Results Point to Success of In Vivo Gene Editing: Two studies show signs that the introduced DNA is functioning, but it’s too early to know if patients actually benefit. https://www.the-scientist.com/news-opinion/preliminary-results-point-to-success-of-in-vivo-gene-editing-65452?utm_content=85124144&utm_medium=social&utm_source=twitter&hss_channel=tw-18198832 and https://investor.sangamo.com/news-releases/news-release-details/sangamo-announces-interim-results-phase-12-champions-study.

“Preliminary results from a clinical trial, shared by the researchers at the WORLDSymposium conference in Orlando, Florida, last week (February 7), suggest success in actually altering the DNA, although it’s still unclear whether the intervention will help the patients… The men enrolled in the studies by the company Sangamo include eight patients with Hunter syndrome and three with Hurler syndrome… These are rare metabolic disorders caused by mutations that leave the men without an enzyme needed to break down certain polysaccharides. In turn, sugars accumulate in the body, leading to organ damage and often early death.”

6 February 2019 Robin Lovell-Badge CRISPR babies: a view from the centre of the storm. http://dev.biologists.org/content/146/3/dev175778.

“In this Spotlight, I provide my perspective on the events that occurred shortly prior to and at the summit, where He Jiankui gave an account of his activities. I also discuss what was wrong with his approach and how, after more research and with appropriate regulation, clinical applications of germline genome editing in humans may be justifiable.”

1 February 2019 Rob Stein New U.S. Experiments Aim To Create Gene-Edited Human Embryos. https://www.npr.org/sections/health-shots/2019/02/01/689623550/new-u-s-experiments-aim-to-create-gene-edited-human-embryos.

“A scientist in New York is conducting experiments designed to modify DNA in human embryos as a step toward someday preventing inherited diseases, NPR has learned. For now, the work is confined to a laboratory. But the research, if successful, would mark another step toward turning CRISPR, a powerful form of gene editing, into a tool for medical treatment.”

January 25 2019 Carolyn Wilke Clones Made of CRISPRed Monkeys — Researchers edited macaque embryos to induce symptoms of sleep disorders and chose one animal to clone. A bioethicist questions the study’s appropriateness. https://www.the-scientist.com/news-opinion/clones-made-of-crispred-monkeys-65387#.XE9zxzNffKI.twitter.

Chinese scientists have cloned five gene-edited macaque monkeys, the researchers reported in two papers in National Science Review on January 24. These clones were made though the somatic cell nuclear transfer method that was used to produce the first primate clones, also macaques, announced roughly a year ago. But in the new report, the monkeys’ genomes were first edited using CRISPR-Cas9 to show symptoms of sleep disorders by knocking out BMAL1, an important gene for circadian regulation.”

25 January 2019 Ron Bailey Should We Be Worried About How Gene-Edited Kids Will Affect Future Generations? A new international commission will consider the pros and cons of human genome editing. http://reason.com/blog/2019/01/25/should-we-be-worried-about-how-gene-edit.

According to the United Nations’ Universal Declaration on the Human Genome and Human Rights, the human genome is the common “heritage of humanity”; on that basis a U.N. bioethics commission argued for a permanent “moratorium on genome editing of the human germline.” But enabling governments to decide what sort of children can and cannot be born is the very definition of eugenics. After all, what horrors are parents likely to inflict on their progeny by means of gene-editing? Less risk of disease, stronger bodies, and nimbler brains. While some parents will certainly make mistaken choices as gene-editing and assisted reproduction technologies advance, they are surely far more trustworthy guardians of the human gene pool than any set of well-intentioned bureaucrats. How worried should the rest of us be about how gene-edited children will affect future generations? Consider three scenarios. If the edited genes are beneficial to individuals then they will be beneficial to their offspring. If the edited genes tragically turn out to be harmful to individuals, then like deleterious natural genes they will tend to be selected against in reproduction and thus not spread to many folks in future generations. But an even more likely prospect is that edited genes that turn out to be harmful will be fixed by more advanced genetic engineering before they are passed along to the next generation. Given that, the new international commission on human genome editing should firmly reject all calls to ban human genome editing and instead focus its efforts on devising standards for deploying this technology safely.”

24 January 2019 Sharon Begley After ‘CRISPR babies,’ international medical leaders aim to tighten genome editing guidelines. https://www.statnews.com/2019/01/24/crispr-babies-show-need-for-more-specific-rules/.

Less than two years after producing an exhaustive report on human genome editing, the U.S. National Academy of Medicine and the National Academy of Sciences are planning an international commission on the most controversial use of that technology — creating “CRISPR babies,” medicine academy president Dr. Victor Dzau announced on Thursday at the World Economic Forum in Davos, Switzerland.”

23 January 2019 Pam Belluck How to Stop Rogue Gene-Editing of Human Embryos? Some U.S. researchers knew of a Chinese scientist’s intentions to implant edited embryos but were unable to stop him. Now scientific institutions are trying to devise global safeguards. https://www.nytimes.com/2019/01/23/health/gene-editing-babies-crispr.html.

Now, nearly two months after Dr. He shook the scientific world by announcing he had created the first genetically edited babies — twins, born in November — the world’s major science and medical institutions are urgently trying to come up with international safeguards to keep such rogue experiments from happening again.”

22 January Jenna Gallegos A CRISPR approach to greener beer https://allianceforscience.cornell.edu/blog/2019/01/crispr-approach-greener-beer/.

“First came the IPAs and then the double IPAs, triple IPAs, and imperial IPAs. The theme? More hops. Like most hipsters, I love a good hoppy beer. So I was disappointed to learn that hops are not environmentally friendly. Fortunately, scientists are brewing up new ways to decrease the environmental footprint of a pint, though ideologies could prevent these green beers from ever making it to tap houses.”

21 January Austin Ramzy & Sui-Lee Wee Scientist Who Edited Babies’ Genes Is Likely to Face Charges in China. https://www.nytimes.com/2019/01/21/world/asia/china-gene-editing-babies-he-jiankui.html?smid=tw-nytimes&smtyp=cur.

“A Chinese scientist who claimed to have created the world’s first genetically edited babies “seriously violated” state regulations, according to the results of an initial government investigation reported on Monday by Chinese state media. The investigators’ findings indicate that the scientist, He Jiankui, and his collaborators are likely to face criminal charges… The investigation found that Dr. He and his team had edited the genes of human embryos and then implanted the embryos in female volunteers, as he claimed last year. One volunteer gave birth to twin girls in November, and another volunteer is now pregnant, according to Xinhua, the Chinese state news agency… The university announced on Monday that it was rescinding Dr. He’s contract and canceling all of his teaching and research activities there. In countries including the United States, such a clinical trial would be banned. But China has laxer regulations on such research, and it was not immediately clear which specific laws Dr. He was accused of breaking.”

16 January 2019 R. Alta Charo, J.D. Rogues and Regulation of Germline Editing. https://www.nejm.org/doi/full/10.1056/NEJMms1817528.

“Calling for a moratorium on germline editing won’t stop rogue actors. Instead, an “ecosystem” approach to regulation might minimize premature, unwarranted, or dangerous research and complement efforts to develop a consensus about acceptable and unacceptable uses.”

13 January 2019 Anjana Ahuja Beyond ‘superbabies’: how Crispr is revolutionising medicine — Genome-editing offers new tools for diagnostics, drug discovery and treating disease. https://www.ft.com/content/c30d8f84-fe1e-11e8-b03f-bc62050f3c4e.

“The targets we’re finding with Crispr-Cas9 are going to guide the drugs coming out in the 2020s…” There are thought to be around 10,000 disorders resulting from a single mutation, such as cystic fibrosis. “Many scientists consider genome editing to have great potential for dealing with inherited genetic disorders…”

29 December 2018 Lauran Neergaard AP-NORC Poll: Edit baby genes for health, not smarts. https://apnews.com/ef1161deac194f2ca1fd99457dc2cf15 & http://apnorc.org/projects/Pages/Human-Genetic-Engineering.aspx.

“Most Americans say it would be OK to use gene-editing technology to create babies protected against a variety of diseases — but a new poll finds they’d draw the line at changing DNA so children are born smarter, faster or taller.”

28 December Elsie Chen and Paul Mozur. Chinese Scientist Who Claimed to Make Genetically Edited Babies Is Kept Under Guard. https://www.nytimes.com/2018/12/28/world/asia/he-jiankui-china-scientist-gene-editing.html?smid=tw-nytimesscience&smtyp=cur.

“SHENZHEN, China — The Chinese scientist who shocked the world by claiming that he had created the first genetically edited babies is sequestered in a small university guesthouse in the southern city of Shenzhen, where he remains under guard by a dozen unidentified men. The sighting of the scientist, He Jiankui, this week was the first since he appeared at a conference in Hong Kong in late November and defended his actions. For the past few weeks, rumors had swirled about whether Dr. He was under house arrest. His university and the Chinese Government, which has put Dr. He under investigation, have been silent about his fate.”

20 December Wensheng Wei Genetics Society of China Responds. https://www.nature.com/magazine-assets/d41586-018-07802-2/d41586-018-07802-2.pdf.

“Such work would violate the current code of conduct from China’s ministry of health, as well as internationally accepted ethical guidelines… The consensus of the international scientific community, including Chinese researchers in genome editing, is that engineering the human germline for reproductive purposes should be forbidden until the scientific issues have been resolved and there is broad social agreement.”

19 December Paul Knoepfler Gene editing: sloppy definitions mislead. https://www.nature.com/articles/d41586-018-07802-2 …

“Characterizing He’s claimed mutations to the CCR5 gene as ‘edits’ misleads the public by implying that they were planned and applied with accuracy. It seems, however, that they were the result of random insertions and deletions of DNA.”

17 December Sharon Begley @sxbegle & Andrew Joseph The CRISPR shocker: How genome-editing scientist He Jiankui rose from obscurity to stun the world. https://www.statnews.com/2018/12/17/crispr-shocker-genome-editing-scientist-he-jiankui/.

17 December Jeremy J. Berg Are the mutations carried by the reported CRISPR babies, Lulu and Nana, new in the human population? http://www.jjbpopgen.org/blog.

“…One of the many things that makes He’s actions so ethically and morally dubious is that neither child’s genotype was actually modified to be homozygous for the Δ32 mutation. Instead, from what I’ve been able to gather, Lulu seems to be heterozygous (or perhaps mosaic?) for a 15 base pair in-frame deletion close to where the Δ32 mutation is located, while Nana appears to have a mosaic genotype, with some cells carrying a 1 base pair insertion, and others carrying a 4 base pair deletion, again, generally in the same region. None of these three mutations have been studied extensively, either in humans, or in a model system, meaning we really have no idea what they will do. The procedure should not have been done. I was curious, however, after reading the following exchange on twitter, about whether we would expect that these mutations are truly “new”, or if we might expect that there are other carriers already out there in the human population somewhere…”

14 December 2018 Victor J. Dzau, Marcia McNutt, Chunli Bai Wake-up call from Hong Kong. http://science.sciencemag.org/content/362/6420/1215.

“The current guidelines and principles on human germline genome editing are based on sound scientific and ethical principles. However, this case highlights the urgent need to accelerate efforts to reach international agreement upon more specific criteria and standards that have to be met before human germline editing would be deemed permissible.”

14 December 2018 United Nations World Health Organisation Gene Editing: WHO establishing expert panel to develop global standards for governance and oversight of human gene editing. https://www.who.int/ethics/topics/gene-editing/en/.

“WHO is establishing a global multi-disciplinary expert panel to examine the scientific, ethical, social and legal challenges associated with human gene editing (both somatic and germ cell). The panel will review the current literature on the state of the research and its applications, and societal attitudes towards the different uses of this technology. WHO will then receive advice from the panel on appropriate oversight and governance mechanisms, both at the national and global level. Core to this work will be understanding how to promote transparency and trustworthy practices and how to ensure appropriate risk/benefit assessments are performed prior to any decision on authorization.”

11 December Megan Molteni How do you publish the work of a scientific villain? https://www.wired.com/story/how-do-you-publish-the-work-of-a-scientific-villain/?mbid=social_tw_sci&utm_brand=wired&utm_campaign=wiredscience&utm_medium=social&utm_social-type=owned&utm_source=twitter

Grapples with the issue how to publish a pivotal piece of research without rewarding a researcher for profound technical and moral lapses. Spoiler alert — we do not yet have a satisfactory answer.

10 December Sharon Begley Ethical issues plagued newly surfaced paper by ‘CRISPR babies’ scientist. https://www.statnews.com/2018/12/10/crispr-babies-scientists-paper-rejected/

10 December Maggie Koerth-Baker We Have Ways To Stop Rogue Scientists. They Don’t Always Work. https://fivethirtyeight.com/features/we-have-ways-to-stop-rogue-scientists-they-dont-always-work/.

“There are tools that we can use to place limits on scientists and the choices they make. But none of them can fully, reliably, put the public in the driver’s seat. And maybe that’s OK… There’s a lot of research that once was reviled but turned out to be not so bad after someone slipped through the cracks and tried it.”

4 December Stephen Johnson Chinese scientist vanishes after claiming to have made first gene-edited babies-The controversial scientist He Jiankui is currently missing after causing major controversy in late November. https://bigthink.com/politics-current-affairs/chinese-scientist-jiankui-he-missing.

4 December Dan Vergano & Cassy Cho China’s HIV And Infertility Crisis Made The Gene-Edited Babies Experiment Possible — “I didn’t want to be a lab rat,” a man who dropped out of the experiment told a Chinese magazine. https://www.buzzfeednews.com/article/danvergano/gene-edited-babies-china-hiv-ivf …

This report lays out the extent to which He violated Chinese law and ethics rules. ““I turned them down, because I didn’t want to be a lab rat,” said the husband, Zheng Xiao (a pseudonym… to protect him from harassment). A researcher on He’s team revealed that the gene editing was experimental only after they had recruited the couple from a small town in China to what was billed as an HIV vaccine trial.”

4 December Sharon Begley ‘CRISPR babies’ lab asked U.S. Scientist for help to disable cholesterol gene in human embryos. https://www.statnews.com/2018/12/04/crispr-babies-cholesterol-gene-editing/.

Spotlight on the slippery slope greased by He Jiankui.

4 December Paul Knoepfler He Jiankui didn’t really gene edit those girls: he mutated them https://ipscell.com/2018/12/he-jiankiu-didnt-really-gene-edit-those-girls-he-mutated-them/.

3 December Paul Knoepfler We need a temporary moratorium on using gene editing to create babies. https://www.statnews.com/2018/12/03/temporary-moratorium-gene-editing-babies/.

3 December Grant Jacobs Genome-edited babies-what’s the worry? https://sciblogs.co.nz/code-for-life/2018/12/03/genome-edited-babies-whats-the-worry-1/.

A detailed indictment of the technical failings of He Jiankui’s work.

3 December Ed Yong The CRISPR Baby Scandal Gets Worse by the Day — The alleged creation of the world’s first gene-edited infants was full of technical errors and ethical blunders. Here are the 15 most damning details. https://www.theatlantic.com/science/archive/2018/12/15-worrying-things-about-crispr-babies-scandal/577234/.

The most comprehensive, concise summary of He Jiankui’s multiple transgressions.

2 December Natasha Mitchell World’s first CRISPR gene edited babies born — are we ready? https://www.abc.net.au/radionational/programs/sciencefriction/world-first-gene-edited-twins/10571596.

2 December Marilynn Marchione and Christina Larson Could anyone have stopped gene-edited babies experiment? https://www.apnews.com/8d79b8da09624aabbec28d1227650a66.

1 December Carl Zimmer Genetically Modified People Are Walking Among Us-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. https://www.nytimes.com/2018/12/01/sunday-review/crispr-china-babies-gene-editing.html.

A splash of important historical context suggesting at least some of the reaction to He Jiankui’s considerable misdeeds may be overblown.

30 November Megan Molteni US biotech firms made China’s gene-edited babies possible https://www.wired.com/story/us-biotech-firms-made-chinese-crispr-babies-possible/

30 November Mark Yarborough Who missed the chance to stop the CRISPR babies scientist? Look in the mirror. https://www.statnews.com/2018/11/30/missed-chance-stop-crispr-babies-scientist/.

This bioethicist attempts to arrogate responsibility for He Jiankui’s to the scientific community that anticipated it might happen and defined norms against it rather than blaming the lone wolf who was actually responsible.

30 November Jon Cohen An ‘epic scientific misadventure’: NIH head Francis Collins ponders fallout from CRISPR baby study. https://www.sciencemag.org/news/2018/11/epic-scientific-misadventure-nih-head-francis-collins-ponders-fallout-crispr-baby-study.

“A “profoundly unfortunate,” “ill-considered,” “epic scientific misadventure” that “flout[ed] international ethical norms” and was “largely carried out in secret” with “utterly unconvincing” justifications.”

30 November Dennis Normile Shock greets claim of CRISPR-edited babies-Apparent germline editing by Chinese researcher prompts outrage and investigations. http://science.sciencemag.org/content/362/6419/1091?sso=1&sso_redirect_count=1&oauth-code=50daf4d5-73d9-4891-9a87-44b048b40113.

30 November David Cyranoski First CRISPR babies: six questions that remain — Startling human-genome editing claim leaves many open questions, from He Jiankui’s next move to the future of the field. https://www.nature.com/articles/d41586-018-07607-3.

29 November George Seidel How a scientist says he made a gene-edited baby — and what health worries may ensue. https://theconversation.com/how-a-scientist-says-he-made-a-gene-edited-baby-and-what-health-worries-may-ensue-107764.

30 November Devang Mehta: The first CRISPRed babies are here, what’s next? Why we were caught unawares and and why we need a long-term project to edit the human germline. https://blogs.plos.org/synbio/2018/11/30/opinion-the-first-crispred-babies-are-here-whats-next/.

29 November Carolyn Y. Johnson and Gerry Shih Scientists call for a halt to reproductive uses of gene editing, rebuke Chinese researcher. https://www.washingtonpost.com/national/health-science/scientists-call-for-a-halt-to-genetically-editing-embryos-rebuke-chinese-researcher/2018/11/29/16d5b602-f328-11e8-bc79-68604ed88993_story.html?noredirect=on&utm_term=.bd3cd50b033e.

29 November J. Benajamin Hurlbut The Chinese gene-editing experiment was an outrage. The scientific community shares blame. We’re overdue for a society-wide conversation about this. technology. https://www.washingtonpost.com/outlook/2018/11/29/chinese-gene-editing-experiment-was-an-outrage-broader-scientific-community-shares-some-blame/?utm_term=.e2f9fd0bd71c.

29 November I. Glenn Cohen How Scott Gottlieb is Wrong on the Gene Edited Baby Debacle. http://blog.petrieflom.law.harvard.edu/2018/11/29/how-scott-gottlieb-is-wrong-on-the-gene-edited-baby-debacle/.

Calls FDA Commissioner to task for lamenting the alleged lack of governance that allowed He Jiankui’s work to proceed, ignoring that the remedies he proposes that would have prevented it (legality, ethical norms) were largely in place.

28 November Christina Larson Gene-editing Chinese scientist kept much of his work secret. https://www.apnews.com/13303d99c4f849829e98350301e334a9.

28 November John Lauerman and Rachel Chang Quicktake: Brave New World of Editing Human DNA Starts in China https://www.bloomberg.com/news/articles/2018-11-28/brave-new-world-of-editing-human-dna-starts-in-china-quicktake.

28 November Grant Jacobs Human gene-edited babies: hold the horses. https://sciblogs.co.nz/code-f or-life/2018/11/28/human-gene-edited-babies-hold-the-horses/.

Additional procedural regularities highlighted.

28 November David Cyranoski CRISPR-baby scientist fails to satisfy critics — He Jiankui gives talk about controversial claim of genome editing babies, but ethical questions remain. https://www.nature.com/articles/d41586-018-07573-w.

28 November The NIH Director Statement on Claim of First Gene-Edited Babies by Chinese Researcher. https://www.nih.gov/about-nih/who-we-are/nih-director/statements/statement-claim-first-gene-edited-babies-chinese-researcher.

NIH Director strongly condemns He’s work, for “[flouting] international ethical norms… the medical necessity…is utterly unconvincing, the informed consent process appears highly questionable, and the possibility of damaging off-target effects has not been satisfactorily explored.”; suggests preventing similar recurrences may require “…development of binding international consensus on setting limits for this kind of research.”

28 November Preetika Rana Second Woman Implanted With Genetically Modified Embryo, Scientist Says. He Jiankui, who claims to have produced the world’s first genetically modified babies, faced critics at a Hong Kong conference. https://www.wsj.com/articles/second-woman-implanted-with-genetically-modified-embryo-scientist-says-1543412960.

28 November Jon Cohen “I feel an obligation to be balanced.” Noted biologist comes to defense of gene editing babies. https://www.sciencemag.org/news/2018/11/i-feel-obligation-be-balanced-noted-biologist-comes-defense-gene-editing-babies.

George Church places He’s work in historical context, concedes irregularities in ethical consideration and “paperwork” but suggests these will be overshadowed by the good health of the test subjects, assuming that continues to hold.

27 November Paul Knoepfler Trying to connect the dots on CRISPR baby story paints a dark, cloudy picture. https://ipscell.com/2018/11/trying-to-connect-the-dots-on-crispr-baby-story-paints-a-dark-cloudy-picture/.

27 November Eric J. Topol Editing Babies? We Need to Learn a Lot More First — An experiment in China to alter the genomes of embryos in vitro, then implant them in the mother, is a step too far. https://www.nytimes.com/2018/11/27/opinion/genetically-edited-babies-china.html …

NYT OpEd by a Professor of molecular medicine at the Scripps Research Institute: “…If true, this hacking of their biological operating instructions, which they will pass on to their children and generations to come, is a dangerous breach of medical ethics and responsible research and must be condemned.”

27 November Rebecca Robbins UC Berkeley researcher, told of CRISPR’d baby study a year ago, warned scientist not to do it. https://www.statnews.com/2018/11/27/uc-berkeley-gene-edited-babies-china/.

27 November Akchat Rathi The Crispr baby news was carefully orchestrated PR — until it all went wrong. https://qz.com/1474814/the-cripsr-baby-news-was-carefully-orchestrated-pr-until-it-all-went-wrong/.

How He Jiankui anticipated and tried to shape the media tsunami.

27 November Sharon Begley He took a crash course in bioethics. Then he created CRISPR babies. https://www.statnews.com/2018/11/27/crispr-babies-creator-soaked-up-bioethics/.

He Jiankui talked with some experts about ethical aspects of his work, but ignored or failed to understand their advice and failed to disclose what he was doing.

27 November Sarah Zhang Chinese Scientists Are Outraged by Reports of Gene-Edited Babies — Researchers fear that the controversial study will be a stain on China’s scientific reputation. https://www.theatlantic.com/science/archive/2018/11/china-crispr-babies/576784/.

26 November Akshat Rathi and Echo Huang. More than 100 Chinese scientists have condemned the CRISPR baby experiment as “crazy.’ https://qz.com/1474530/chinese-scientists-condemn-crispr-baby-experiment-as-crazy/.

Widespread condemnation from Chinese scientists but rooted more in nationalistic concerns for reputation than the evident ethical shortcomings and procedural irregularities of He Jiankui’s work.

26 November Paul Knoepfler Why CRISPR baby production (if it happened) was unethical & dangerous. https://ipscell.com/2018/11/why-crispr-baby-production-if-it-happened-was-unethical-dangerous/.

Analysis of some of the technical factors that illuminate the unwisdom of He Jiankui’s project which “focused on [changing natural] traits rather than [treating] genetic disease.”

26 November Nidhi Subbaraman HIV Researchers Slam The Scientist Who Made Genetically Engineered Babies — “I’m angry on behalf of the genetic engineering community. I’m angry on behalf of the HIV community,” one expert said. https://www.buzzfeednews.com/article/nidhisubbaraman/hiv-crispr-china-twins …

“HIV researchers are incensed that the first reported use of gene editing in human embryos was aimed at conferring HIV immunity, criticizing the move as reckless and unnecessary.”

26 November Update: CRISPR co-inventor responds to claim of first genetically edited babies. https://news.berkeley.edu/2018/11/26/doudna-responds-to-claim-of-first-crispr-edited-babies/.

Nobel Laureate in waiting criticizes ethical shortcomings reported in early reports of He Jiankui’s work.

26 November Ed Yong A Reckless and Needless Use of Gene Editing on Human Embryos — A researcher’s claim that two CRISPR-edited baby girls have been born has been met with widespread condemnation from scientists and ethicists alike. https://www.theatlantic.com/science/archive/2018/11/first-gene-edited-babies-have-allegedly-been-born-in-china/576661/.

Stellar science writer delivers one of the first summaries and indictments of the irregular path He Jiankui followed in his efforts to gene edit the first human babies.

26 November Nuffield Council on Bioethics Press Release: Nuffield Council statement on reports of gene-edited babies born in China. http://nuffieldbioethics.org/news/2018/nuffield-council-statement-reports-geneedited-babies-born-china.

“Coming on the eve of the second international summit on genome editing, this announcement looks like a cynical attempt to seize headlines. If the claims are true, it is a premature, inexplicable and possibly reckless intervention that may threaten the responsible development of future applications of genome editing.”

26 November Statement from the Organizing Committee on Reported Human Embryo Genome Editing. http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=11262018.

“Whether the clinical protocols that resulted in the births in China conformed with the guidance [developed by the community] …remains to be determined.”

26 November Marilynn Marchione Chinese researcher claims first gene edited babies. https://www.washingtonpost.com/world/asia_pacific/ap-exclusive-first-gene-edited-babies-claimed-in-china/2018/11/25/bb9b74de-f124-11e8-99c2-cfca6fcf610c_story.html?utm_term=.9096eca96537.

This reporter had been tracking the story for some time, and provides the first deep dive into who did what and how.

25 November Antonio Regalado EXCLUSIVE: Chinese scientists are creating CRISPR babies-A daring effort is under way to create the first children whose DNA has been tailored using gene editing. https://www.technologyreview.com/s/612458/exclusive-chinese-scientists-are-creating-crispr-babies/.

The story that broke the announcement of He Jiankui’s paradigm shifting claims.

21 August 2017 Devang Mehta This biologist believes we should embrace human gene editing — It could free millions from preventable, predetermined suffering. https://massivesci.com/articles/crispr-human-gene-editing-designer/.

A thoughtful contribution from a scientist who anticipated that ill-considered rogue ventures might provoke and over reaction, and sketches how that might be avoided so that humanity can benefit from wise application of this powerful emerging technology.

23 July Shaun Griffin Broad societal debate should inform the use of genome editing in reproduction. https://blogs.bmj.com/bmj/2018/07/23/shaun-griffin-broad-societal-debate-and-a-resurrected-human-genetics-commission-should-inform-the-use-of-genome-editing-in-reproduction/.

22 July Kenan Malik Fear of dystopian change should not blind us to the potential of gene editing. https://www.theguardian.com/commentisfree/2018/jul/21/designer-babies-gene-editing-curing-disease.

18 July Sarah Chan Debate, not ‘designer babies’ hyperbole, is what we need in genome editing. http://masoninstitute.blogspot.com/2018/07/debate-not-designer-babies-hyperbole-is.html.

17 July Tom Whipple No moral bar to creating designer babies, medical ethics body claims. https://www.thetimes.co.uk/article/no-moral-bar-to-creating-designer-babies-medical-ethics-body-claims-2hd0nql56.

17 July Sarah Knapton Designer babies on horizon as ethics council gives green light to genetically edited embryos. https://www.telegraph.co.uk/science/2018/07/16/designer-babies-horizon-ethics-council-gives-green-light-genetically/.

17 July Nuffield Council on Bioethics Press Release: Heritable genome editing: action needed to secure responsible way forward. http://nuffieldbioethics.org/news/2018/heritable-genome-editing-action-needed-secure-responsible.

16 July Alex Matthews-King Designer babies: Picking traits for non-medical reasons could be ‘morally permissible’, says UK ethics group; Letting parents choose preferred characteristics of offspring to avoid disease or otherwise, could be acceptable if it doesn’t entrench disadvantages, says Nuffield Council on Bioethics. https://www.independent.co.uk/news/health/designer-babies-gene-editing-genetics-genome-nuffield-ethics-disease-a8449971.html.

16 July Colin Fernandez Editing genes to create ‘designer babies’ in order to enhance their looks or intelligence could be ‘morally permissible’, UK ethics council says. https://www.dailymail.co.uk/health/article-5960981/Creating-designer-babies-enhance-looks-intelligence-morally-permissible.html.

The Nuffield Council says key issues determining the ethical permissibility of gene editing babies are the welfare of the future person; they also opined that gene editing should not be used in ways that would increase disadvantage, discrimination or division in society; and that gene editing embryos is not unacceptable in itself, and there is no reason to rule it out in principle.

16 July No reason to rule out genome editing in human reproduction, ethics experts say. https://www.dailymail.co.uk/wires/pa/article-5960771/No-reason-rule-genome-editing-human-reproduction-ethics-experts-say.html.

16 July, 2018 Nuffield Council on Bioethics: Genome editing and human reproduction: Social and Ethical Issues. http://nuffieldbioethics.org/project/genome-editing-human-reproduction.

The reliably credible and independent Nuffield Council has navigated complicated moral thickets on many challenging issues. This landmark contribution extends their excellent record and provides appropriate yardsticks for evaluating and considering human gene editing.

14 February, 2017 U.S. National Academies of Sciences, Engineering & Medicine Human Genome Editing: Science, Ethics, and Governance. https://www.nap.edu/catalog/24623/human-genome-editing-science-ethics-and-governance.

This thoughtful and thorough NAS report lays a solid groundwork for the responsible and ethical pursuit of gene editing applied to humans. It anticipated and described measures for preventing the kind of abuses manifest in He Jiankui’s approach.

The Information Technology and Innovation Foundation is a think tank focusing on the intersection of technological innovation and public policy.

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