Stem Cell Researcher to Reddit: "Ask Me Anything" on Human Genetic Modification

By Elliot Hosman, Biopolitical Times | 12.10.2015

Biopolitical Times

https://www.geneticsandsociety.org/biopolitical-times/stem-cell-researc…

Paul Knoepfler is a stem cell and genetics researcher at UC Davis who works with CRISPR on in vitro research in stem cells and cancer. He writes and blogs widely about developing issues in genetics and genomics, and has been particularly prescient about the emerging human genetic modification controversy. Paul will be interviewed by Nathaniel Comfort early next year (stay tuned for the exact date) in our online interview series Talking Biopolitics about his forthcoming book GMO Sapiens: The Life-Changing Science of Designing Babies [Amazon, World Scientific].

Before the International Summit on Human Gene Editing co-organized by the National Academies in D.C. on December 1-3, Paul published an article in Slate titled We Need a Moratorium on Genetically Modifying Humans and gave a TED Talk in Vienna on the pressing concerns raised by CRISPR-Cas9 “gene editing” and its controversial proposed use in human reproduction.

On December 7, Paul engaged with online forum community Reddit’s celebrated feature Ask Me Anything (AMA) and fielded hundreds of pressing questions about the promise and peril of CRISPR-Cas9 “gene editing” embryos and gametes for reproduction. Some of the questions posted by Redditors online related to the current technical capacity of precise genetic engineering: What is currently possible with “gene editing” tools? What genetic conditions could be targeted? How soon until I can have a baby unicorn child? The short answer to all of them, echoed by Broad Institute director Eric Lander at the #GeneEditSummit, is: We are still learning the genetics behind complex traits, and at this point the science has not caught up to our imaginations. But it is the range of non-technical questions related to this radical technology that have many, including Paul, working to involve the public in this crucial debate.

In setting the stage for the dialogue, Paul posited a range of questions on the societal implications of precise DNA engineering in the global laboratory, including:

[A]re we ready to make genetically modified people (what I call GMO sapiens as a mashup of Homo sapiens and GMO)?
Is it OK to do this for trying to prevent genetic diseases? What about for human enhancement via designer babies? Could we draw the line between the two? …
Are past works of art like Brave New World and GATTACA now appropriate to discuss as human genetic modification appears to be marching toward reality? Or is that just going to scare people?
What about eugenics turbo-charged by new technology?
How do we find the right balance in discussion of this revolutionary issue so that we do not freak people out, but at the same time we have a real discussion that doesn’t sugar coat things or dodge real potential issues? (formatting added)

Here is a small selection of questions and answers from the AMA that strike at the variety of concerns raised by genetically modifying human cells for reproduction.

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[frankstandard] Q: “I've been interested in CRISPR since hearing about it on Radio Lab a few months back, so it was exciting to see you here! My question: Dr Stephen Hawking recently highlighted that we don't really have to fear robots in the future, but rather Capitalism and the societal structures that will create greater inequality, stating, ‘If machines produce everything we need, the outcome will depend on how things are distributed. Everyone can enjoy a life of luxurious leisure if the machine-produced wealth is shared, or most people can end up miserably poor if the machine-owners successfully lobby against wealth redistribution. So far, the trend seems to be toward the second option, with technology driving ever-increasing inequality.’ Can you please comment on this related to CRISPR and the potential for it to create more inequality due the current structure of society?”

[PaulKnoepfler] A: “This kind of concern is legit and it applies to any kind of technological advancement. A disruptive, powerful technology like CRISPR has already got the attention of investors to the tune of potentially $1-$2billion USD. They are going to want a return on their investment. Human modification, whether for disease prevention or enhancement, is unlikely any time soon after (or if) it is proven safe and effective to reach a diverse group of patients of different socioeconomic classes. There are risks for active class strife as well through eugenics too. These are issues we should be actively discussing, but too often they aren't on the table.”
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[reddevilit] Q: “Can this be used to "cure" certain genetic syndromes like the Costello syndrome, by enabling/disabling specific protein or gene?”

[PaulKnoepfler] A: “That is the hope, but rather than using the word "cure" which implies a pre-existing person/patient, I think the more accurate word to use is "prevent". If you make a designer baby with a corrected mutation then there was no disease to start with to cure. Just something that was prevented.”
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[CybernewtonDS] Q: “…Given how expensive medical treatments in the US are mostly inaccessible to working-class individuals, what social safeguards will we have in place to ensure little Timmy and dear Sally are free from Huntington's, Tay-Sachs, and Down Syndrome? The greatest fear here is not that the wealthy will have smarter and healthier offspring, but that those without the means to afford any corrective procedures will bear the brunt of bills and burdens of untreated genetic disorders.

[PaulKnoepfler] A: “Socioeconomic issues are relevant and important here. As with any expensive medical produce (thinking for the moment only about non-enhancement uses for human genetic modification) there could well be disparities and issues of access.”
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[wiizbiiz] Q: “Dr Knoepfler, I'm a person with hemophilia deeply involved in education and activism within the bleeding disorders community. The entire community has been watching the field of genetic engineering very carefully, and lots of people are very excited about the incredible innovations that CRISPR makes possible. At the same time, however, the hemophilia community has an incredibly troubled history when it comes to medical innovation and securing access to safe and affordable treatments. During the 70s and 80s thousands of hemophiliacs died of HIV and Hep C contracted from tainted blood products while the factor companies and FDA failed to warn us, and today those very same companies who create our meds in the 80s have used every trick in the book to ensure that factor prices remain exorbitantly high. In view of this history, my question for you is a personal one and not necessarily a professional one. What are your biggest concerns about CRISPR's application, and do you think that the world economy is structured in such a way that it's ready for CRISPR? If not, why and what needs to be done?"

[PaulKnoepfler] A: “Hi, Thanks for sharing your story and that of your community. I really admire those who work on education and are patient activists. Commercial interests is a big issue with CRISPR that wasn't discussed much at all at last week's National Academy Summit that I attended. Some have patent applications and companies focused on CRISPR. Clearly investors view CRISPR as a potential big source of profit. How will the money side of things influence the evolution of this technology? I don't know for sure, but there is likely to be a strong influence. How will the FDA handle CRISPR? I'm not sure, but it is unlikely to be able to do much in advance. We need to view this very cautiously and avoid hyping the potential clinical applications. I was disappointed that the Summit failed to recommend a moratorium on clinical use because I think there are quite some risks here both to individuals and to society. There's real potential too. We need a balanced, democratic discussion on all of this that includes the public. So far that hasn't happened. The main driving force for me to write my new book was to educate people and spark discussion because there are huge issues here.”
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[Jayrobinson92] Q: “Hello! Thanks for doing this AMA. I'm really glad you mentioned the movie GATTACA, that was the first thing I thought of when I started reading this post. When watching that movie I honestly felt like I was looking at the future. What is your opinion? Do you think we're potentially headed to a future where genetic predisposition can dictate the paths of our lives?”

[PaulKnoepfler] A: “Hi Jay, I do think GATTACA is relevant here. Many scientists get upset with the movie is mentioned in this context because they think it scares people, but at the same time this kind of technology is now here today so what's the point in pretending it isn't? My sense is that the makers of GATTACA were very good at predicting the future in some ways. It remains unclear if human genetic selection and modification will permanently change our species and our world, but today it seems far more possible at least relatively speaking than just 3 years ago. At the same time I agree with one of the commenters below that an important message of the movie is that genetics is not destiny. I make that point in my book too. There's a catchy notion floating around out there --genetic determinism --that argues the opposite. It says genetics is more powerful than anything else. I don't think it's everything, but it is powerful. One of my concerns about human genetic modification that was a focus of my TED talk is that it could become driven by pop culture and even by governments with bad consequences. Eugenics is a real possibility. To those who say, "don't mention GATTACA or Brave New World" in the discussion of human gene editing, I say go watch the movie and read the book again, and then ask yourself if they really don't belong in the discussion.”