EXPLORE The Science & Fiction of ANYA
CREATING THE NARVAL CULTURE & BIOLOGY
An anthropology informed thought experiment gave the Narval their origin story.
Guest post by Jose Moreno-Cortes on creating ANYA’s Narval language.
Our science advisor, Dr. Ting Wu, explains how/why she lent her research to ANYA.
Science advisor, Dr. Ruth McCole, shares her experiences on ANYA.
Jon Irabagon composed the Narval Theme Song
IN THE NEWS - GENETICS TECHNOLOGIES
In ANYA, fictional scientist Dr. Seymour Livingston considers pursuing clandestine use of “gene-editing technology” to help a friend conceive. At the time of filming and now, that technology would be CRISPR.
As we wrote the script and filmed, our collaborators at PGED were working to educate legislators about genetics technologies, including CRISPR. Now the first law to directly regulate CRISPR has appeared in form of a California “human biohacking” bill demanding a warning on DYI genetic-engineering kits.
During the development of ANYA we had the privilege of attending several PGED congressional briefings. This is the first resolution I’ve noticed to come out in support of helping “forge an international consensus regarding the limits of ethical clinical use of genome-edited human embryos.”
Article by Jef Akst for the The Scientist
Image by istock.com
ANYA takes a fictional look at a couple, a scientist, and a small community deciding whether to pursue gene-editing to have a healthy baby. In the real world, the race is on to produce — and to regulate — gene-edited babies.
When we filmed ANYA, this kind of gene-editing was still fiction. But by last November, when we were in post-production, news broke that a Chinese scientist had created twin “CRISPR babies.” Now, a Russian molecular biologist plans to implant gene-edited embryos in HIV+ volunteer mothers as early as the end of 2019. His goal is similar: to edit the embryos’ CCR5 genes in a way that reduces the risks of passing on HIV in utero.
This proposal comes at a time when most scientists believe that experiments on “gene-edited babies” should be banned until an international ethical framework is in place.
Read Nature’s 6/10/19 article on Dr. Denis Rebrikov’s controversial proposal.
ANYA encourages viewers to join the worldwide debate now underway on how best to regulate gene editing in human sperm, eggs, and embryos.
“The scientist who edited the genomes of twin girls in an attempt to make them resistant to HIV might have inadvertently shortened their life expectancy.”
Image: Biophysicist He Jiankui helped to create the world's first gene-edited babies.
Image Credit: Mark Schiefelbein/AP/Shutterstock
The databases used in genetics research consist overwhelmingly of genomes from people of European descent. To boost the participation of marginalized communities in genetic studies, doctors must first win back their trust.
Investigations continue into Dr. He Jianku’s claim to have created the world’s first gene-edited babies. This article details responses from Dr. He’s American advisors when he was a postdoctoral fellow and grad student. The article raises a number of questions. Do faculty members — and academic institutions more generally — bear responsibility in the actions of the students they mentor? When does this obligation end? To whom should they report suspected ethical breaches or “corner cutting”? Especially when the students have moved on to other institutions or countries?
Article by Pam Belluck for the New York Times.
Image by Mark Schiefelbein, Associated Press: Dr. He’s team working on an embryo in a sperm injection microscope in Shenzhen, China.
“A push to calculate a "genetic income score" using giant DNA databases raises a raft of ethical questions.”
Article by Megan Molteni, Wired.
Image by Lauren Joseph, Getty Images.
ANYA deals with unintended consequences of contemporary genetic technologies and broaches the related ethics.
Stories coming out in the news suggest we only scratched the surface of what’s coming. At the 2019 Festival of Genomics in London, I learned a new UK initiative to collect 5,000,000 human genomes for medical and insurance purposes. Norway and other countries have similar but smaller programs. More sequenced DNA means bigger more accurate data bases for personalized medicine, crime fighting, and other purposes.
From news coming out of China this week, it appears that mass collection of DNA has given us something else to worry about: surveillance, oppression, and thorny issues about how foreign corporations and academics participate in legitimizing activities that might be illegal or at least unethical at home.
HERE ARE A few things you can buy with $200: one bluetooth-controlled fire pit, 100 lab-grown Impossible White Castle sliders, access to the 6.4 billion base pairs that make up all the DNA coiled inside your cells. Veritas Genetics current promotion offers $199 genome sequencing (typically $999). (Meghan Molteni for Wired.)
Another twist in the ongoing story of scientist He Jiankui, whose whereabouts are now unknown after his experiment editing the genes of two Chinese babies was condemned by scientists around the world. Reported by Kelsey Cheng for MailOnline
It’s been a week of fast and furious headlines as the news of the first “CRISPR babies” spreads since the original announcement by MIT Technology Review on 11/25/18. It’s been fascinating to watch how different media cover the story. It will be interesting to see if the public ultimately embraces the technological advance or meets it with a collective shrug. (Preliminary news analysis by ANYA filmmaker, anthropologist Carylanna Taylor).
“It felt as if humanity had crossed an important line: In China, a scientist named He Jiankui announced on Monday that twins had been born in November with a gene that he had edited when they were embryos. But in some ways this news is not new at all. A few genetically modified people already walk among us.” Carl Zimmer (New York Times) goes on to remind us of a few of these cases, three-parent embryos through “mitochondrial replacement therapy.”
In the Washington Post, J. Benjamin Hurlbut, Sheila Jasanoff, and Krishanu Saha hold the scientific community partly responsible the gene-editing “experiment that was not supposed to happen.” It’s a helpful summary of where the news of the possible first "CRISPR babies” by Dr. He Jiankui (pictured) and his team fits into current scientific consensus or lack thereof.
Pictured: American biologist & Nobel laureate in medicine David Baltimore criticized a fellow scientist, physicist He Jiankui, who claims he has edited the genes human embryos, during the Second International Summit on Human Genome Editing at the University of Hong Kong. (NPR’s All Things Considered with Rob Stein)
Bioethicist and friend of ANYA, Jeantine Lunshof, and director of Harvard’s science & technology studies, Sheila Jasanoff spoke on WBUR Open Source with Chris Lydon talking gene-edited babies 11/29 @9pm. Listen to the full hour discussion.
This VERGE article by Angela Chen suggests that the so-called CRISPR babies may not be resistant to HIV as intended (and indeed may have a compromised immune system) and highlights several of the reasons why the scientific community is up in arms. We’ll know more if more data is released for peer review.
“A scientist in China has dominated headlines this week with the claim that his research team has successfully created the world’s first genetically-edited babies. If true, the experiment raises a lot of difficult ethical questions—ones that mainstream films and TV shows have been exploring for decades.
The topic of genetic engineering is so prevalent in pop culture that it’s practically a genre unto itself. At the heart of these science fiction depictions is the issue of whether the benefits of genetic engineering—that is, potentially curing diseases—outweigh the colossal risks, which range from eugenics to unintended mutations.” (Adam Epstein, Quartz)
In this New York Times Op-Ed, professor of molecular medicine Dr. Eric J. Topol argues the time for gene-editing human embryos may came but “that time has not arrived.”
From the New York Times
By Gina Kolata, Sui-Lee Wee and Pam Belluck
“Ever since scientists created the powerful gene editing technique Crispr, they have braced apprehensively for the day when it would be used to create a genetically altered human being. Many nations banned such work, fearing it could be misused to alter everything from eye color to I.Q.”
Looking to get up to speed fast on the news of the first gene-edited human embryo? Take a look at this accessible and informative overview for Bloomberg. My quick take on the subtext of John Lauerman’s article and Freya Ingrid Morales’s image? There are a lot of people in business and politics eager to make sense of this news.
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.”
“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.’”
IN THE NEWS - HUMAN DIVERSITY
Our family tree is getting bushier with each new study!
Today, a study published in CELL draws on DNA analysis of living Southeast Asians to show that a fourth species of humans lived alongside modern humans, Denisovans, and Neanderthals . What’s more, the Denisovans were surprisingly diverse and may have been the last group to live beside modern humans, contributing to the DNA of modern humans as recently as 15,000 years ago.
Evolutionary anthropologist John Hawks shares his thoughts on the meaning of the latest discovery in the human family tree: a previously undiscovered new species of human relatives named Homo luzonensis after the island in the Philippines where they lived.
This post to the Sapiens.org anthropology blog, puts the finding in perspective: over the past 20 years there’s been a boom of unprecedented new discoveries. Not all may merit the label “new species” but they speak to many-branched human tree and many opportunities for new exploration.
Mounting evidence shows that ancient human groups (some once considered different species) not only coexisted, they interbred. (Nature)
Carl Zimmer: “Genetic analysis of bones discovered in a Siberian cave hints that the prehistoric world may have been filled with ‘hybrid’ humans.” (New York Times)
“When modern humans migrated out of Africa some 60,000 years ago, they found the Eurasian continent already inhabited by brawny, big-browed Neanderthals. We know that at least some encounters between the two kinds of human produced offspring, because the genomes of people living outside Africa today are composed of some 1 to 4 percent Neanderthal DNA. Two studies published concurrently in Nature and Science on Wednesday suggest that while the Neanderthal contribution to our genomes was modest, it may have proved vitally important.” (Ed Yong, National Geographic)
Image comparing Neanderthal and modern human anatomy by Joe McNally.
It’s no coincidence that this is the month we began writing ANYA and that ANYA’s fictional geneticist, “Dr. Seymour Livingston,” studies Neanderthal DNA.
in the news - Diversity in Film & SCIENCE
UCLA’s “Hollywood Diversity Report 2019” shows that “despite gains in front of and behind the camera, women and minorities remain underrepresented in film and television. The study also included evidence that suggests audiences tend to prefer movies and TV shows that feature relatively diverse casts.”
Image Credit: Still from the animated film “Coco”
Fewer than 1 percent of doctorates in math are awarded to African-Americans. Edray Goins, who earned one of them, found the upper reaches of the math world a challenging place. His experiences offer insight into what academic life might be like for ANYA’s Dr. Seymour Livingston.
Diversity is central to ANYA: on screen, in the crew, and in the story. Article by Thessaly La Force (New York Times)
ANYA: behind the scenes
We’re set to film the lab scenes at Andreas Pfenning’s CMU genetics lab.
Rehearsals started for ANYA!
Meet Rafael Sosa as “The Narval Elder”
Two weeks prior to production, we held open casting calls at the Centro Cultural Barco de Papel in Jackson Heights, Queens. The Spanish language bookstore and cultural center helped get the word out and complete camera tests with 46 local Latinos and Latinas, many of whom appear in the film.
In this reposting of our First Encounter Production blog, Carylanna reflects on their creative collaboration so far with scientists and with the National Academy of Sciences Science & Entertainment Exchange.
Top takeaway? If you’re a filmmaker approaching a scientist with a fiction project, recognize that you’re extending an invitation to play. Make the most of the opportunity and allow for time and space to brainstorm new alternatives for your project. You might be happily surprised! In our experience, the result was not just a more scientifically accurate film but more well rounded characters and a better story.
Jacob’s & Carylanna’s first outline for ANYA.
RESOURCES for educators
The website of the American Anthropological Association (AAA) offers K-12 teaching resources, field schools, public ed, and higher ed learning resources. Two online resources of note:
“The RACE Project explains differences among people and reveals the reality – and unreality – of race. The story of race is complex and may challenge how we think about race and human variation, about the differences and similarities among people.” (A video from this project makes an appearance in ANYA!)
“World on the Move: 100,000 Years of Human Migration, draws on scholarship concerning the depth of human history and the breadth of cultures across the globe to help people rethink their ideas about moving, displacement, and belonging—and to use what they learn to better understand their own migration histories and those of others.”
Image by: World on the Move
The Personal Genetics Education Project raises awareness and sparks conversation about the potential benefits as well as the ethical, legal, and social implications of personal genetics. They have free lesson plans available for high school and educators.
From associations and blogs to genomic databases and government initiatives, discover a wide range of genetics and genomics resources available online. Courtesy of Frontline Genomics.
Created by Dr. Laura Rivard's’ UCSD biology students, this site includes a range of introductory genetics tutorials, updates on current research and testing, and a chance to explore genetics laws and ethics through case studies.
This is a great place to start, but be aware that it appears to have been created in 2015 and may not be up to date.
The Genetics/Genomics Competency Center (G2C2) provides an online repository of curated genetics/genomics education materials for educators and practitioners. Includes peer reviewed collections for genetic counselors, nurses, pharmacists, physician assistants, and physicians.