August 2, 2017, by Brigitte Nerlich

Designer babies? Not again!

Preface: I had just put the finishing touches to this post and I was doing the washing up, when I heard on the six o’clock news that the paper I’ll talk about below has now been published in Nature. I’ll still publish this post though. It would great to compare the pre-paper news coverage with the post-paper news coverage at some point….

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Around 26 July I saw on twitter that scientists had gene edited human embryos. I let this pass me by, as I assumed most of that reporting was hype. Then I went into our local Cheesecake Shop in search of sugar and there on the counter was the Daily Mail with a headline that said something about designer babies. I put two and two together and thought, oh no, not designer babies again.

So, as I am wont to do, I put in the search terms ‘embryo’ and ‘gene editing’ into the newspaper data base Lexis Nexis (26-30 July; All English Language News) and started to follow the story a bit. I found 117 articles, of which 36 were duplicates. Excluding duplicates 24 newspapers and 41 ‘websites’, i.e. blogs posts (of course these are not all blogs, only those recorded on Lexis Nexis), reported on the story. Blogs were the first to report on the story. But where did the story come from?

‘Story zero’, so to speak, was an article in MIT Technology Review (which was not in the Lexis Nexis sample for some mysterious reason), written by Steve Conner, former head science writer at The Independent. Many of the newspapers and blogs more or less repeated the O’Connor article verbatim. A number of other articles in i-independent elaborated on the article. Another large chunk of the newspaper coverage was written by Marilynn Marchione, Associated Press Chief Medical Writer.

This blog post is not a complete media analysis of this gene editing ‘breakthrough’. It only wants to provide some glimpses into the origin and spread of this story and the way it was framed.

Breaking the story

Let’s start at the beginning. What is this all about? We only know what this seems to be about through the article published  by Steve Connor on 26 July in the MIT Technology Review [this has changed now, see Preface]. I couldn’t find any sources where the scientists involved in the actual research spoke themselves about this breakthrough; on the contrary, most seem to refused to comment, as the study has not yet been published in a peer reviewed journal. As Antonio Regalado said on twitter: this was Conner’s ‘scoop’.

The story told by Steve Connor goes like this: A group of scientists led by embryologist Shoukhrat Mitalipov of Oregon Health and Science University in Portland seems to have successfully edited human embryos using CRISPR and ‘deleted’ disease-carrying genes without too many problems (see Science). As an article on a recent call by Jennifer Doudna for more societal debate said: “The report showed that CRISPR could be used to repair a genetic defect in single-celled human embryos. The embryos were not allowed to develop beyond a few days. This project received private funding, allowing it to sidestep government restrictions on such genetic editing. The study was leaked to a British reporter and hasn’t been published yet.” (paragraphs removed) [It has now]

So how did blogs and newspaper articles react to this scoop? Blogs reacted mostly cautiously and many, such as one post by Henry Greely, said that we had still ample time to discuss social, legal and ethical issues before this apparent advance in basic science had any major repercussions on reproductive medicine; another one by Jessica Berg stressed that “this study did not entail the creation of ‘designer babies’ and that “while this is a significant step forward in science regarding the use of CRIPSR technique, it is only one step”. Similarly, news articles written by Marchione were quite restrained.

Two articles made it appear as if designer babies were now a reality. One in the Daily Mail and one in China Daily. Following on from the scoop and a world-exclusive by Conner, i-independent published a series of articles that delved quite deeply into the sci-fi context in which so-called designer babies have been discussed since 1997 and Dolly the sheep. I’ll come back to that.

The MIT Technology Review article

What about the MIT Technology Review article itself that set all these discussions in train? Let’s have a look at it: It’s entitled: “First human embryos edited in U.S.” The article claims that this breakthrough will put an end to the “awe, envy, and some alarm” that scientists have, apparently, felt towards similar research being carried out in China.

The first line of the article talks about “genetically modified” human embryos. The research carried out is framed as “a milestone on what may prove to an inevitable journey toward the birth of the first genetically modified humans” that “could open the floodgates to a brave new world of ‘designer babies’ engineered with genetic enhancements”. So, we have GM, milestone, inevitable, designer babies and brave new world. The article also includes a reference to U.S. intelligence calling CRISPR a potential “weapon of mass destruction”.

After talking about the lead author of the study and his previous work on cloning and stem cells, a brief reference is made to the National Academies of Sciences report that gave the “green light” for basic laboratory research into germline modification. This is followed by a paragraph highlighting that laws and regulation forbid “to turn an edited IVF embryo into a baby”, the article ends by saying: “Despite such barriers, the creation of a gene-edited person could be attempted at any moment, including by IVF clinics operating facilities in countries where there are no such legal restrictions.” So: GM/gene-edited, designer babies are, it appears around the corner; not only that: they are framed as inevitable.

Uptake and discussion in the MSM

In the following I’ll focus on how mainstream media picked up the story. Blog posts would deserve a separate analysis. Mainstream media were relatively slow to react to this story and I haven’t found anything in The London Times, The New York Times or The Guardian for example. The first newspaper to report on the story was, curiously, the Cyprus Mail (byline Reuters News Service), which published its report on 27 July. It refers to the MIT Technology Review report, but also stresses that “Results of the peer-reviewed study are expected to be published soon in a scientific journal, according to OHSU [Oregon Health and Science University] spokesman Eric Robinson” (a name not mentioned in the MIT report).

The second article in the corpus is by Steve Connor himself, written for i-independent Print Ltd and published 27 July under the headline: “Human embryos genetically altered for first time with new technology; WORLD EXCLUSIVE: US scientists demonstrate how inherited disease can be ‘corrected’ in early life.” (Online I also found the title “One giant step for designer babies”). The article makes clear that Dr Mitalipov and his colleagues work under strict confidentiality agreement with a leading scientific journal (“In fact, the journal in question has yet to issue a media embargo notice on this study”) and that the article is based on ‘other sources’.

The third article in the sample is also by Connor and entitled “Technique could open the door to ‘pick-and-choose’ designer babies; BACKGROUND”. It refers explicitly to Aldous Huxley’s 1932 dystopian novel Brave New World. It also talks about “GM” babies and genetic enhancement, closing with the question: “Cosmetic surgery was developed initially to treat people disfigured by accidents. Now it is used as beauty aid. Could germline genetic engineering go the same way?”

The fourth article is by Marilynn Marchione for The Norther Star and appeared strangely in the sports section. It stresses that “The experiment was just an exercise in science”. This article was modified and extended over time in my sample and reprinted in various shapes and forms in a variety of US and Canadian newspapers. In one version (28 July for the Calgary Herald) Alta Charo is quoted as saying “This was purely laboratory-based work… it’s only a first step.” Charo quotes regulatory barriers and stresses that: “The public has plenty of time” to discuss the ethical issues. In another version for The Telegram & Gazette (Massachusetts), 28 July, Henry Greely, director of the Stanford University’s Center for Law and the Biosciences, who wrote an important blog post on the matter, is quoted as saying: “’Everybody should calm down’ because this is just one of many steps advancing the science, and there are regulatory safeguards already in place. ‘We’ve got time to do it carefully,’ he said”.

One article on the issue appeared in the Daily Telegraph on 28 July stating the main facts of the matter; another article appeared in the Daily Mail on 28 July under the headline “Breakthrough in bid for first designer baby” and it does not mention that the study has not yet been published (although other versions I found online do).

After that we get several more i-independent articles. One, written by Oliver Duff, is entitled: “Citius, altius, fortius [faster, higher, stronger]: Dawn of the super-baby? Letter from the Editor.” The piece talks about genetically modified children being around the concern and says: “Yes, Aldous Huxley, Kazuo Ishiguro [author of the 2005 novel Never Let me Go] and Andrew Niccol [director of the 1997 film GATTACA] got the detail wrong in their science fiction But the startling ethical questions that their work posed now need answers”. The next article in that series has the title “From cows and monkeys to human embryos; PROFILE”, written by Russell Parton, focusing on the life and work of Mitalipov who. This is followed by brief history of IVF and three-parent families.

The sci-fi background to the study is further explored in an article by Adam Sherwin (Arts and Media correspondent for i-independent) entitled “When real life echoes science fiction: is this our ‘brave new world’?; CULTURE”. Here GATTACA, Brave New World, Ishiguro’s novel (title not mentioned) Never Let me Go, and Frank Herbert’s novel Dune (which, apparently, tells the story of attempts to create a ‘superior race’ or male ‘superbeings’) are mentioned. It ends by saying: “The trope can be traced back to the creation of Frankenstein’s monster, through the re-animation of cadavers via electricity, in the 1931 film adaptation of Mary Shelley’s novel Frankenstein”.

Switching from fiction to reality, the i-independent also published a comment piece by Professor Joyce Harper, of UCL, member of the Nuffield Council on Bioethic’s working party on genome-editing and human reproduction, under the title: “If we can choose a child’s gender, what will we choose next?; Comment”.

Conner contributes a second article to the series under the title “The genie is out of the bottle – posing questions for humanity; Analysis. Conner pleads for the creation of an “international agreement to control this gene-editing technology”, because: “It is no good regulating in one country if a maverick doctor can go off and use it in another.”

The final article in this i-independent series of articles is by Tom Bawden (Science correspondent) entitled “Scientists call for new rules on GM designer babies; COVER STORY”. This article, again focusing on regulation, quotes Professor Jonathan Montgomery, “one of the UK’s leading health law academics” who is quoted as having stated that “while regulations in the UK are currently robust, new rules would need to be introduced if the human embryo gene-editing procedure was going to be used clinically, rather than just for research purposes”.

The last two articles in my sample are by Vivek Wadhwa, and academic and entrepreneur, who wrote one article about “genetics ethics” (July 30, The Hartford Courant and Sunday Telegram, Massachusetts) and another entitled “Would you ‘design’ your own child?”. He posits that “The era of human gene editing has begun”, that “CRISPR’s seductiveness is beginning to overtake the calls for caution” and he asks essentially for ‘responsible innovation’: “With the source code of life now so easy to hack, and biologists and the medical world ready to embrace its possibilities, how do we ensure the responsible use of CRISPR?” Using a metaphor that was widely used in the stem cell debate he goes on to say: “We have arrived at a Rubicon. Humans are on the verge of finally being able to modify their own evolution [here echoing Jennifer Doundna’s book entitled A Crack in Creation]. The question is whether they can use this newfound superpower in a responsible way that will benefit the plane and its people.”

Responsible language and literature use

What can we learn from this quick run through the papers. Some bloggers and reporters call for caution and make rather moderate claims about what this breakthrough is and how we should deal with it, stressing that it is still a rather small and incremental step, rather than a sudden revolution. Others eschew moderation and throw the gene-edited baby into the sci-fi bath-water, so to speak. We hear about Brave New World, Gattaca, Frankenstein, super-babies, the genie being out of the bottle, floods of designer babies and a giant step being taken. Some ethicists use the metaphor of the Rubicon and talk about a ‘newfound superpower’ that needs to be restrained; many speculate about designing babies.

Such language and such literary references, especially when used in a perfunctory way might not stimulate the ethical debate that many call for; instead they might well distract from it. Germline editing is a difficult issue. We need to think about it seriously. As Dr Helen O’Neill, Programme Director of Reproductive Science and Women’s Health, Embryology, IVF and Reproductive Genetics Group at University College, London, said (quoted in an article in the Daily Telegraph): “Unfortunately, the news about the potential ability to correct disease has been eclipsed by the fear of so-called ‘designer babies’”.

The question is: Should science reporters (and ethicists and scientists) avoid sensationalising scientific claims? Or is that a silly question, given that reporters write stories in order to be read, as Connor said himself in a tweet, and scientists (and ethicists) have to write stories now in order to be read, funded and rewarded? But what does this mean for the ethics of global debates about the ethics of germline editing?

Beware of (what Timothy Caulfield calls) !

PS

Summaries of the actual research and discussion of its implications by Ed Yong for The Atlantic, Ian Sample for The Guardian, NPR, Pam Belluck for the NYT, Heidi Ledford for Nature… Somebody will have their work cut out, if they want to do a media analysis of the post-paper reporting… Here is a storify to get people started…

And for some historical background on all the tropes, see Philip Ball’s Unnatural: the heretical idea of making people

Image: Pexels – twin babies

 

 

 

 

Posted in designer babiesgenomicsLanguageresponsible innovationScience Communication