In this MIT Technology Review piece by Antonio Regalado, “[a] daring effort is under way to create the first children whose DNA has been tailored using gene editing.”

Like the characters in ANYA, scientists are grappling with the ethics of this breakthrough technology.

Ruth Padawer’s piece in The New York Times Magazine — “Sigrid Johnson Was Black. A DNA Test Said She Wasn’t.”— shows “[t]he surge in popularity of services like 23andMe and Ancestry means that more and more people are unearthing long-buried connections and surprises in their ancestry.” With both services offering deep “Black Friday” discounts ($49 and $59 respectively) to encourage holiday gifting, DYI genetics testing is bound to get more popular and to unearth more quandaries like Sigrid’s.

Geneticist George Church’s new company, Nebula Genomics, “aims to give people complete control over who gets access to their data, and let individuals decide whether or not to sell the information, and to whom.” (Richard Harris, NPR)

MIT Technology Review's Laura Hercher asks one of the most pressing questions of our time: ”Are we designing inequality into our genes?”

“The NHS Genomic Medicine Service is the first national genomic healthcare service in the world and will allow faster diagnosis and personalised care.

The Health and Social Care Secretary has announced an ambition to sequence 5 million genomes in the UK over the next 5 years.

Where relevant, patients will be asked to give consent for their genome data to be securely analysed by approved researchers, who will develop new tests and treatments for cancer and rare diseases.”

Read the full announcement.

“Scientists in China have used a cutting-edge Crispr [gene editing] technique to repair a disease-causing mutation in viable human embryos.” (WIRED)

We don’t name it as Crispr, but the plot of ANYA hinges on this cutting edge gene editing technique. Here’s “everything you need to know about how scientists can repurpose a bacterial immune system to alter DNA, making everything from cheap insulin to extra starchy corn” (by Megan Molteni for WIRED).

A beautiful profile by Amy Dockser Marcus on what drives our science advisor, Dr. Ting Wu (Wall Street Journal).

“The number of people who have had their DNA analyzed with direct-to-consumer genetic genealogy tests more than doubled during 2017 and now exceeds 12 million, according to industry estimates. Most of those tested are in the US, suggesting that around 1 in 25 American adults now have access to personal genetic data—a figure that could spur a range of new genetic analysis services. The boom comes amid a price war in which companies offered under-$60 tests and 2-for-1 deals during an end-of-year blitz of advertising and discounts.” (Antonio Regalado, MIT Technology Review)

I got the inkling from hearing about George Church’s company Veritas and meeting business reps at the pgEd Industry Forum and Festival of Genomics that genomics is big business. In this Investors Business Daily article, Alliston Gatlin takes a look at three small biotech companies - Crispr Therapeutics (CRSP), Intellia Therapeutics(NTLA) and Editas Medicine (EDIT)- that recently went public with combined annual sales of less than $50 million and big dreams of curing debilitating disease.

Sam Kulkarni (president of CRISPR Theraputics) says “it's unlikely the market will remain at just three publicly traded biotech companies with CRISPR technology in the long run. The technology is just that remarkable. ‘Once in a lifetime may be a little bit of a stretch, maybe not," he said. "But it's definitely a once in a generation type of advance in the field. […] Here we have the basis of a CRISPR platform to create the next big biotech giants.’”

ANYA collaborator, Dr. Jeantine E. Lunshof, talks genetics & ethics. (World Post)

“After Asilomar [a 1975 conference to discuss limitations on genetic engineering], the worst fears about genetic engineering did not come true. […] The odds are that human germline editing will develop similarly, having some value as both a research tool and as therapy. And as with genetic engineering, it's become too late to ask whether or not we should edit the human germline; we can now only ask how the experiments will proceed.” (Michael White, The Pacific Standard)

“A baby has been born to a previously infertile couple in Ukraine using a new type of "three-person IVF". Doctors in Kiev used a method called pronuclear transfer in what is a world first. It is, however, not the first child born with DNA from three parents. The baby girl, born on 5 January, is thought to be the world's second "modern three-parent baby" - another child was created using a slightly different method in Mexico last year. The Kiev team fertilised the mother's egg with her partner's sperm. They then transferred the combined genes into an egg taken from a donor.” (Michelle Roberts, BBC News online)

Vox’s  Eliza Barclay and Brad Plumer proclaim that “The gene-editing tool’s potential to upend science is dizzying.” They argue that “designer babies” are “for now, mainly a sideshow.” Instead they turned to Nicola Patron, a molecular and synthetic biologist at at the Earlham Institute in the UK and a variety of other scientists “what they think are realistically the most exciting ways that scientists might one day change the world using CRISPR.” They share some of those ideas from food to Alzheimer’s to fuel in this article.

“A team of Chinese scientists is planning to use a CRISPR-Cas9 gene-editing treatment on humans for the first time next month. The procedure at Sichuan University's West China Hospital in Chengdu will attempt to treat lung cancer in patients where chemotherapy, radiation therapy, and other conventional treatments have failed. If successful, the trial could pave the way for more CRISPR-based treatments in the future, potentially revolutionizing the way we treat a wide variety of diseases and ailments.” (Jay Bennett, Popular Mechanics)

This New York Times article now carries the online headline “Scientists Talk Privately About Creating a Synthetic Human Genome.” I’d have to confirm, but if I recall correctly it was changed after the scientists - including Harvard Medical School’s George Church (pictured) who we’ve gotten to know a bit through ANYA - protested that the talks weren’t so much “secret” as discussing private details of a yet-to-be-published journal article. Numerous sites (including this link to The Seattle Times) carry the original title. Reading the article by NYT’s Andrew Pollack, gives an interesting insider’s perspective of how cutting-edge science is done. Comparing the two versions reminds me of how powerfully images can communicate subtle bias: in one, George seems serious and imposing. In the other he is warm and welcoming. Which better fits the heralding of a synthetic genome? Like the Times, I opted to lead with James King-Holmes’ image of sixty trays containing the entire human genome as 23,040 different fragments of cloned DNA.

The first mentions of deploying gene modification that we noticed were related to modifying mosquitos in ways that would help eradicate mosquito-born diseases. The headline is from a 2015 PNAS academic journal article. The picture is from a more scandalous 2017 news article “Could this zoo of mutant mosquitoes lead the way to eradicating Zika?”

“An international group of scientists meeting in Washington called on Thursday for what would, in effect, be a moratorium on making inheritable changes to the human genome.” (Nicholas Wade for the New York Times). Our science advisors at Harvard Medical School and their colleagues were part of the conversation. We first heard about this bit of major but under-reported news from them.