Storygram: Marilynn Marchione’s “Chinese Researcher Claims First Gene-Edited Babies”

He Jiankui revealed in November 2018 that that he helped make the world’s first genetically edited babies using CRISPR gene-editing technology.

 


The following story diagram—or Storygram—annotates an award-winning story to shed light on what makes some of the best science writing so outstanding. The Storygram series is a joint project of The Open Notebook and the Council for the Advancement of Science Writing. It is supported in part by a grant from the Gordon and Betty Moore Foundation. This Storygram is co-published at the CASW Showcase.


 

Associated Press reporter Marilynn Marchione had exclusive access to the Chinese scientist He Jiankui, who announced in November 2018 that he had helped make the world’s first genetically edited babies using the gene-editing tool CRISPR. Marchione’s story reporting the announcement, “Chinese Researcher Claims First Gene-Edited Babies,” appeared on November 26, 2018. In the Storygram annotation below, I analyze aspects of Marchione’s story that contribute to its impact, and I talk with Marchione about her experience reporting and writing the piece. (In a separate Storygram , I also analyze Antonio Regalado’s MIT Technology Review story breaking the same news.)

 


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Jump to Q&A with Marilynn Marchione

Story Annotation

Chinese Researcher Claims First Gene-Edited Babies
By Marilynn Marchione, Associated Press
Published November 26, 2018
(Reprinted with permission)

(Go back to our CRISPR babies splash page.)

 

 

HONG KONG (AP) — A Chinese researcher claimsThe word “claims” here, and in the headline, makes clear this news is not verified. Given the explosive nature of this report, Marchione is wise to immediately signal to readers that the evidence for the claim is incomplete. that he helped make the world’s first genetically edited babies — twin girls born this month whose DNA he said he altered with a powerful new tool capable of rewriting the very blueprint of life.

If true,Emphasizing doubt again it would be a profound leap of science and ethics.This line packs a powerful punch and establishes the story’s central theme. Set off by paragraph breaks, it is its own exclamation point.

A U.S. scientist said he took part in the work in China, but this kind of gene editing is banned in the United States because the DNA changes can pass to future generations and it risks harming other genes.Marchione deftly highlights the two biggest concerns using simple language for a general audience.

Many mainstream scientists think it’s too unsafe to try, and some denounced the Chinese report as human experimentation.

The researcher, He Jiankui of Shenzhen, said he altered embryos for seven couples during fertility treatments, with one pregnancy resulting thus far. He said his goal was not to cure or prevent an inherited disease,This phrase hints at the ethical discussion to come, because these are reasons that might justify gene editing embryos at some point in the future. but to try to bestow a trait that few people naturally have — an ability to resist possible future infection with HIV, the AIDS virus.

He said the parents involved declined to be identified or interviewed, and he would not say where they live or where the work was done.

There is no independent confirmation of He’s claim, and it has not been published in a journal, where it would be vetted by other experts.This is background information about how science works. It helps readers understand that this scientist skirted the usual processes. He revealed it Monday in Hong Kong to one of the organizers of an international conference on gene editing that is set to begin Tuesday, and earlier in exclusive interviews with The Associated Press.The reporter had access to the scientist.

“I feel a strong responsibility that it’s not just to make a first, but also make it an example,” He told the AP. “Society will decide what to do next” in terms of allowing or forbidding such science.

Some scientists were astounded to hear of the claim and strongly condemned it.He got his say. Now it’s time to hear from other experts.

It’s “unconscionable … an experiment on human beings that is not morally or ethically defensible,” said Dr. Kiran Musunuru, a University of Pennsylvania gene editing expert and editor of a genetics journal.This description shows readers that he’s in the field and of such a stature to edit a journal. It’s better than a job title, which can be inscrutable.

“This is far too premature,” said Dr. Eric Topol, who heads the Scripps Research Translational Institute in California. “We’re dealing with the operating instructions of a human being. It’s a big deal.”

However, one famed geneticist, Harvard University’s George Church, defended attempting gene editing for HIV,The condemnation is not universal. It’s important to have multiple voices here. which he called “a major and growing public health threat.”

“I think this is justifiable,” Church said of that goal.

In recent years scientists have discovered a relatively easy way to edit genes,As we turn to what the method is, I admire Marchione’s use of plain language. the strands of DNA that govern the body. The tool, called CRISPR-cas9, makes it possible to operate on DNAThat verb is perfect—simple, original, and descriptive. and to supply a needed gene or disable one that’s causing problems.

If you’re enjoying this Storygram, also check out two resources that partly inspired this project: the Nieman Storyboard‘s Annotation Tuesday! series and Holly Stocking’s The New York Times Reader: Science & Technology.

It’s only recently been tried in adults to treat deadly diseases, and the changes are confined to that person. Editing sperm, eggs or embryos is different — the changes can be inherited. In the U.S., it’s not allowed except for lab research. China outlaws human cloning but not specifically gene editing.

He Jiankui (HEH JEE’-an-qway), who goes by “JK,” studied at Rice and Stanford universities in the U.S. before returning to his homeland to open a lab at Southern University of Science and Technology of China in Shenzhen, where he also has two genetics companies. The university said He’s work “seriously violated academic ethics and standards” and planned to investigate. A spokesman for He confirmed that he has been on leave from teaching since early this year,The scientist is suffering consequences at home. but he remains on the faculty and has a lab at the school.

The U.S. scientist who worked with him on this project after He returned to China was physics and bioengineering professor Michael Deem, who was his adviser at Rice in Houston. Deem also holds what he called “a small stake” in — and is on the scientific advisory boards of — He’s two companies.Super important information; Deem has a financial conflict of interest.

The Chinese researcher said he practiced editingAnother great word choice—”practiced.” Simple, descriptive, and much more efficient than “has done previous research” or some such. mice, monkey and human embryos in the lab for several years and has applied for patents on his methods.

He said he chose embryo gene editing for HIV because these infections are a big problem in China. He sought to disable a gene called CCR5 that forms a protein doorwayAnother example of great word choice—a simple descriptor that illustrates a complicated biological process. that allows HIV, the virus that causes AIDS, to enter a cell.

All of the men in the project had HIV and all of the women did not, but the gene editing was not aimed at preventing the small risk of transmission,Important background for the ethics of this experiment, echoing an earlier statement that this particular “edit” was not meant to cure or prevent current disease. He said. The fathers had their infections deeply suppressed by standard HIV medicines and there are simple ways to keep them from infecting offspring that do not involve altering genes.

Instead, the appeal was to offer couples affected by HIV a chance to have a child that might be protected from a similar fate.

He recruited couples through a Beijing-based AIDS advocacy group called Baihualin. Its leader, known by the pseudonym “Bai Hua,” told the AP that it’s not uncommon for people with HIV to lose jobs or have trouble getting medical care if their infections are revealed.

Here is how He described the work:This lead-in makes clear that this is the scientist’s assertion. As we learned above, it’s only a claim.

The gene editing occurred during IVF, or lab dish fertilization. First, sperm was “washed” to separate it from semen, the fluid where HIV can lurk. A single sperm was placed into a single egg to create an embryo. Then the gene editing tool was added.

When the embryos were 3 to 5 days old, a few cells were removed and checked for editing. Couples could choose whether to use edited or unedited embryos for pregnancy attempts. In all, 16 of 22 embryos were edited, and 11 embryos were used in six implant attempts before the twin pregnancy was achieved, He said.Reminds readers who the source for this information is.

Tests suggest that one twin had both copies of the intended gene altered and the other twin had just one altered, with no evidence of harm to other genes, He said.Again, reminds readers who the source for this information is. Given the controversy surrounding this news, making this abundantly clear, in multiple places, is a wise choice. People with one copy of the gene can still get HIV, although some very limited research suggests their health might decline more slowly once they do.

Several scientists reviewed materials that He provided to the APThis is not your everyday reporting step—usually published data are available for outside experts to comment on. Marchione is showing her work here. and said tests so far are insufficient to say the editing worked or to rule out harm.

They also noted evidence that the editing was incomplete and that at least one twin appears to be a patchwork of cells with various changes.UUsing simple language, Marchione evokes a scary-sounding scenario, that the technique is far from perfect.

“It’s almost like not editing at all” if only some of certain cells were altered, because HIV infection can still occur, Church said.

Church and Musunuru questioned the decision to allow one of the embryos to be used in a pregnancy attempt, because the Chinese researchers said they knew in advance that both copies of the intended gene had not been altered.

“In that child, there really was almost nothing to be gained in terms of protection against HIV and yet you’re exposing that child to all the unknown safety risks,” Musunuru said.

The use of that embryo suggests that the researchers’ “main emphasis was on testing editing rather than avoiding this disease,” Church said.Even the gene-editing supporter Church is suspicious of He’s motives here. This reinforces the idea that while there are some who are generally supportive of this kind of research, they still want certain ethical considerations to be considered.

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Even if editing worked perfectly, people without normal CCR5 genes face higher risks of getting certain other viruses, such as West Nile, and of dying from the flu. Since there are many ways to prevent HIV infection and it’s very treatable if it occurs, those other medical risks are a concern, Musunuru said.This puts the ethics of the work in a classic medical-intervention frame: Do the benefits outweigh the risks?

There also are questions about the way He said he proceeded. He gave official notice of his work long after he said he started it — on Nov. 8, on a Chinese registry of clinical trials.

It’s unclear whether participants fully understood the purpose and potential risks and benefits. For example, consent forms called the project an “AIDS vaccine development” program.Here, Marchione provides important details about why He’s research raises alarms—this sentence suggests that participants may have been duped, since vaccines are standard medicine, but gene-editing is not.

The Rice scientist, Deem, said he was present in China when potential participants gave their consent and that he “absolutely” thinks they were able to understand the risks.

Deem said he worked with He on vaccine research at Rice and considers the gene editing similar to a vaccine.Marchione gives Deem, He’s co-worker, his say.

“That might be a layman’s way of describing it,” he said.

Both men are physics experts with no experience running human clinical trials.Marchione provides a telling detail here. It’s hard to over-emphasize how crazy this sounds: Informed consent is rife with pitfalls even in experienced hands.

The Chinese scientist, He, said he personally made the goals clear and told participants that embryo gene editing has never been tried before and carries risks. He said he also would provide insurance coverage for any children conceived through the project and plans medical follow-up until the children are 18 and longer if they agree once they’re adults.Marchione gives the scientist a chance to defend his informed consent process.

Further pregnancy attempts are on hold until the safety of this one is analyzed and experts in the field weigh in, but participants were not told in advance that they might not have a chance to try what they signed up for once a “first” was achieved, He acknowledged. Free fertility treatment was part of the deal they were offered.

He sought and received approval for his project from Shenzhen Harmonicare Women’s and Children’s Hospital, which is not one of the four hospitals that He said provided embryos for his research or the pregnancy attempts.The same things that made this story tough to report, such as how clinical research may differ in China as compared to the U.S., raise questions. Did using different sites allow the scientist to skirt regulations?

Some staff at some of the other hospitals were kept in the dark about the nature of the research, which He and Deem said was done to keep some participants’ HIV infection from being disclosed.

“We think this is ethical,” said Lin Zhitong, a Harmonicare administrator who heads the ethics panel.

Any medical staff who handled samples that might contain HIV were aware, He said. An embryologist in He’s lab, Qin Jinzhou, confirmed to the AP that he did sperm washing and injected the gene editing tool in some of the pregnancy attempts.

The study participants are not ethicists, He said, but “are as much authorities on what is correct and what is wrong because it’s their life on the line.”

“I believe this is going to help the families and their children,” He said. If it causes unwanted side effects or harm, “I would feel the same pain as they do and it’s going to be my own responsibility.”An interesting choice to end with a quote from the scientist.  After a cascade of questions and critiques, the story leaves the reader to decide if this is sincere or disingenuous.

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AP science writer Christina Larson, video journalist Emily Wang and researcher Fu Ting contributed to this report from Beijing and Shenzhen, China.

This Associated Press series was produced in partnership with the Howard Hughes Medical Institute’s Department of Science Education. The AP is solely responsible for all content.

___

 

(Go back to our CRISPR babies splash page.)

 

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A Conversation with Marilynn Marchione

Jill Adams: How did you learn about this story?

Marilynn Marchione: The story began when I was reporting another story on genetics, and I got a tip. I got it because I work hard to maintain contact and trust with my sources, and by trying to do the best job I can whenever one of these stories comes my way. Also because those sources see the value in how the AP can help explain historic science such as this, and reach such a large population. I’m afraid I’m not going to be able to go into further details about the genesis of the story or the nature of my access.

JA: What did your readers need to know about this story?

MM: There was no doubt that this was news. If it were true, it was a huge leap ethically and scientifically. The question was, what evidence was there for the claim? The first responsibility is to make sure you’re telling the truth.

JA: What is different about reporting controversial research than, say, the latest big study in JAMA?

MM: The biggest challenge is you don’t know what is fact when you start out. You are told some things that you have to verify—and that have not been vetted by a science journal or peers. So we did not have evidence to give [experts] to say: Did editing happen here? Is it even plausible that this happened? There was no way to independently verify what the doctor said he had done.

JA: What were the challenges in reporting on the ethical considerations of this research?

MM: It was just very hard to get a bead on. I kept requesting the protocol for this study and there didn’t seem to be one. The closest I could come was getting consent forms that were given to the potential parents—and those had to be translated. It was extremely difficult and slow-going to translate these things. One of the very opening lines of the consent form described this as something like an “HIV vaccine trial.” I used a couple different translation services, but I wasn’t sure enough about that to quote it. So I had our staffers translate Chinese character by character to make sure that is the word for vaccine and he literally used that word in a consent form. The challenges were magnified by the language differences.

JA: You knew you’d have access to the scientist. Who else was it important to talk to?

MM: We were seeking anybody else who could verify the claim that he was making. Obviously we wanted to speak to the supposed parents, any other study participants, anyone else in his lab that worked with him, anybody from any of the hospitals that were involved, and the AIDS organization that he claimed to have worked with in Beijing.

JA: How about finding outside voices to comment on the ethical considerations of this experiment?

MM: In my experience, it’s never been hard to get people to voice opinions on that sort of thing. The difficulty was we weren’t going to do any of that until we knew if it was true, if we had evidence that this had happened at all, rather than being a hoax.

JA: Is it hard to write about such complex science for a general audience?

MM: It’s extremely hard. I feel like I get out of my depth very quickly in the field. No journalist is going to be in a position to be able to look at sequencing data and say that editing occurred. So I very quickly needed expertise and help.

JA: Were there difficulties writing about the technical aspects of the gene editing?

MM: Fortunately, a year earlier we had had an exclusive on the first gene editing inside the body—a man being treated for a rare disease that was done with a different gene editing tool called zinc finger nucleases. I had reported on that and learned a lot about gene editing. Before that, we had another exclusive on the first CAR-T major results [CAR-T is a cancer immunotherapy that uses molecularly altered immune cells]. So it’s been a field that I have been writing about for a number of years.

JA: I particularly love some of your word choices. In one case, you write that CRISPR makes it possible to “operate” on DNA; in another, when describing the scientist’s previous experience with gene editing embryos, you write that he had “practiced” editing. Both of these are simple words that contain a lot of meaning.

MM: Sometimes I read my stories out loud and if there is a four-syllable word—I call them quarter words—I try to look for a dime or nickel word. Better yet are the penny words—one syllable. If you wouldn’t speak it at the dinner table in normal conversation, I don’t really want it in my story.

JA: Did you struggle with the researcher’s name? I know it is not pronounced like the pronoun he, but it’s easy to read it that way.

MM: It was a writing dilemma. For instance, you couldn’t start a sentence, “He said.” Instead you’ll see many references in the story to “the Chinese scientist said” because we want the reader to be very clear about who was speaking.

JA: Another issue with the researcher’s name was seeing it capitalized, He, in the middle of a sentence. I couldn’t help seeing that as a pronoun for God. And here is this researcher, who some might say is playing God.

MM: You have to be careful about your word choice. We’re aware of religious connotations and try to be very sensitive. I tried to write in the most neutral way I could think of to write. When a subject is controversial, it’s even more important to write neutrally and to just get terms that people are not going to take any issue with.

JA: Once your reporting was done, how did you go about writing the story? How did you choose what you’re going to really billboard up at the top?

MM: It’s very much a collaborative effort—[with] a story of this magnitude, many people at the highest levels are going to be involved. What could we say about a claim that was essentially unverifiable? It seemed like the enormity of the leap for humankind here—that no one has tinkered with the recipe of life before like this, in a way that can be passed to future generations—that was the main thing that was so profound about this.

JA: Is there anything else you’d like add about how you reported or wrote this story?

MM: Even though it was extremely difficult and frustrating, it was still an enormous privilege to tell a science story like that. And every day the question was: Are we going to have to the reader’s trust? We’re not going to betray the reader’s trust. We’re going to make sure that what we write, we know is true.

 

(Go back to our CRISPR babies splash page.)

 

Marilynn Marchione

Marilynn Marchione joined The Associated Press in 2004 after 28 years as a reporter and editor at the Milwaukee Journal Sentinel, the Chicago Sun-Times, and the Akron Beacon Journal. She has won CASW’s Victor Cohn Prize for Excellence in Medical Science Reporting and other awards, and has had numerous fellowships, including one at the U.S. Centers for Disease Control and Prevention. She has a journalism degree from Kent State University. Follow her on Twitter @MmarchioneAP.

 

 

 

 

 

 

Jill U. Adams

Jill U. Adams writes a health column for The Washington Post and is a contributor to The Science Writers’ Handbook. She covers health, psychology, mental health, and education for publications such as Spectrum, The Scientist, and Nature. She reported on the science and policy questions concerning human gene editing for CQ Researcher in 2015. Jill lives in upstate New York and tweets as @juadams.

2 Comments

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