It’s been less than a year and a half since researchers at Sun Yat-sen University reported their first-of-its-kind experiment using CRISPR/Cas-9 to genetically modify nonviable human embryos. Since then, controversy about the prospect of using CRISPR for human reproduction – to alter the traits passed down to future generations – has been covered in hundreds of news articles, editorials, and commentaries. But how well has this media spotlight illuminated the key points of the debate?
Nearly every article that discusses CRISPR uses the term “gene editing,” and many say explicitly that it is a “precise” tool just like a “cut-and-paste” word processing program. A recent paper co-authored by CGS fellow Lisa Ikemoto notes that metaphors used to inform public policy addressing emerging biotechnologies should encompass: (1) the ethical complexity of the technology, (2) an accurate description of how it works, and (3) the known and unknown consequences of various applications. Does the “gene editing” metaphor give us any of that in contemplating the idea of genetically modified babies?
Along with many others, the Center for Genetics and Society is deeply concerned about using CRISPR to modify the human germline, for both safety and societal reasons. First, as nearly all agree, it would be way too risky; among other problems, it could result in off-target effects that would be passed down to future generations. Second, it’s not medically necessary – there are much better and safer ways for people at risk of transmitting inherited diseases to ensure their children are unaffected. Beyond the technical risks of CRISPR are the likely social consequences of allowing human germline interventions, including its use to “enhance” the children of the already affluent, thus reinforcing existing inequalities and creating opportunities for new ones.
Curious about the extent to which these concerns were being fairly represented in the media, we decided to take a closer look. We selected 40 news articles and commentaries covering the potential uses of CRISPR in humans over the last year and a half in three media outlets: The Washington Post, The Guardian, and The New York Times. We then examined each article to see how it handled five specific points that we see as critical to a full understanding of the global, political, and technical aspects of human germline gene editing:
- The first was whether the article notes the difference between somatic gene editing – that is, using CRISPR as a gene therapy to treat affected patients – and germline gene editing – modifying the genes in human embryos or reproductive cells.
- Second, we asked whether the article mentions social and political concerns as well as technical and safety questions.
- The third point we looked for was some acknowledgement that many countries have already established legal prohibitions on human germline modification.
- Fourth, we determined whether the article takes stock of available alternatives to germline gene editing, such as embryo screening (pre-implantation genetic diagnosis or PGD, used with IVF).
- Finally, we asked whether the article accurately represents the potential scope and type of illnesses that germline editing would theoretically be used to address.
This project is a preliminary one, our sample was small, and our results should be seen as tentative. With those caveats in mind, here’s what we found.
Perhaps most surprising and unsettling is that very few articles (only 6 out of 40) mention PGD as an alternative to germline editing that, in nearly every case, would allow people to prevent the transmission of inherited conditions to a fully genetically related child. This omission could mislead readers into believing that germline editing is needed and desired by large numbers of people with genetic conditions, which it is not.
Similarly, only 7 of the 40 articles clearly specify that CRISPR technology would be technically relevant for diseases that have clear genetic determinants, but not for health conditions that are significantly determined either by social and environmental factors, or by so many genetic interactions and trade-offs that choosing which to “edit” could be a fool’s errand.
On the other hand, the majority of articles do distinguish in some way between somatic and germline modification, discuss social and political concerns along the lines of “ethics” and “unequal access,” and touch on other countries’ policies regarding human germline modification. Of the 40 articles in our sample, 28, 31, and 26, respectively, make these points.
It seems reasonable that readers should be able to rely on newspapers like The Washington Post, The Guardian, and The New York Times to make all of the key distinctions and provide key information about recent developments in biotechnology. Proposals to use powerful new technologies to create genetically modified human beings are highly controversial, and we will be ill-equipped to address them with only patchwork understandings of their significance and consequences.
A spreadsheet showing the 40 articles in our sample, and our coding on each of the five points examined can be found here.
Previously on Biopolitical Times:
Image via Flickr/Tom Woodward
Posted in Assisted Reproduction, Bioethics, Biopolitics, Parties & Pundits, Inheritable Genetic Modification, Other Countries, US Federal
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