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Top Biopolitical Times Posts of 2015

Posted by Elliot Hosman, Pete Shanks & Marcy Darnovsky, Biopolitical Times on December 20th, 2015


In 2015, CGS staffers and guest contributors posted 80 blogs at Biopolitical Times. Some were syndicated on our guest blog at Psychology Today, Genetic Crossroads.

Fourteen of our favorite posts plus a series by CGS staffers are shown below in chronological order. Scroll down for posts by our wonderful guest contributors.

Staffers

Contributors and Fellows

A number of remarkable guest bloggers on Biopolitical Times contributed their commentary on a wide variety of issues during 2015. Not much for choosing favorites among our friends, we do want to extend our appreciation for their time and perspectives. In alphabetical order:

George Annas on inheritable genetic modification: The Moral Imperative for Psychologists

Naomi Cahn on donor gametes:The Rights of Donor-Conceived Offspring

Katayoun Chamany on precision medicine: New Rules Proposed to Address Privacy and Trust in the Precision Medicine Initiative

Nathaniel Comfort on inheritable genetic modification: Putting Ourselves in Harm's Way: Thoughts on Pinker and the Role of Bioethics

Colleen Cordes on synthetic biology: DIY Bio-Engineering: Disrupting Democracy

Gwen D’Arcangelis on biosecurity: U.S. Bioweapons Research: Are Anthrax Lab Accidents All We Have to Fear?

Sayantani DasGupta on donor gametes: Why Facebook’s Egg Donor Ads Freak Me Out (And Should Freak You Out Too)

George Estreich on genetic screening: FDA Regulation and Early Prenatal Testing; de-extinction: Of Clocks and Mammoths: The Pitch for De-Extinction; new film releases: Ex Machina: Of Screens and People; and inheritable genetic modification: The Rhetorical Two-Step: Steven Pinker, CRISPR, and Disability

Jaydee Hanson on eugenics reparations: Virginia Votes Compensation for Victims of its Eugenic Sterilization Program

CGS Fellow Lisa Ikemoto on CRISPR/Cas9: Fast Forward-Pause-Stop: The 3-Speed Human Germline Debate; and donor gametes: “High IQ Eggs Wanted” – ads appeal to ego and altruism, offer $10,000

Ricki Lewis on genome sequencing: Universal Newborn Genome Sequencing and Generation Alpha

CGS Fellow Gina Maranto reviewing Deborah Lynn Steinberg's Genes and the Bioimaginary: Genetic Facts, Genetic Reality, Genetic Imaginaries; on precision medicine: "Moonshot Medicine": Putative Precision vs. Messy Genomes; and egg retrieval: Seeking Your Input: Survey on Egg Retrieval

Stuart Newman on inheritable genetic modification: Pinker's Damn: A Naive Rejection of Controls Over Genetic Engineering





Weak Arguments For Modifying the Human Germline

Posted by Pete Shanks on December 10th, 2015


John Harris

At last week’s International Summit on Human Gene Editing, philosopher John Harris made the case for heritable human genetic modification. According to three reliable sources with previous experience of the Manchester-based Harris, he did so in a significantly more understated manner than usual.

One is compelled to conclude that in mid-season form, his act lacks only a red nose and a dancing bear to qualify for an old-fashioned circus (which the Summit was not). Straw men blazed under the withering scorn of his sarcastic ridicule (unlike Monty Python's Doug Piranha, litotes seems not to be part of his arsenal). Some of his gags are so old and trite that I remember them from my own childhood, and at least one particularly sexist poke has been rolling around for 90-odd years. Talking points that should long have been left to rot in peace were exhumed and animated as if by Dr. Frankenstein himself.

OK, enough. A little comedy is fine, but it should be a seasoning, not the main dish.

Video of his performance can be found here (Day 1, Part 3). (Deaf activists pushed for captioning but there’s none on the archived version.) There seems to be no official transcript, but I had access to an audio recording. Much of the talk was included in two preprints he handed out, and also in this peer-reviewed article and this Op-Ed. The italicized numbered headings are accurate paraphrases of Harris’ comments, and all quotations have been checked.

Attempting to Rebut the Objections

Harris began by listing, and attempting to counter, what he understands to be three principal objections to human germline interventions that are “very obvious and obviously fallacious and dogmatic.” In brief, they are: these affect future generations; the risks to future generations are unacceptable; and consent from future generations cannot be obtained. On all three, his characterizations and counter-arguments are, to put it politely, seriously flawed.

Read more





Livetweeting #GeneEditSummit: Democratized Debate or Segregated Conversations?

Posted by Elliot Hosman, Biopolitical Times on December 10th, 2015


In 1975, scientists engaged in an invitation-only conference meant to encourage self-regulation of a new genetic engineering technology that many thought posed significant threats to the living world: recombinant DNA. This meeting met in Monterey, CA at a resort called Asilomar, a name that would ring on for decades as a purported model for scientists wrestling with the social implications of the breakthrough technologies they develop.

In the past few years, a new suite of synthetic biology tools known as “gene editors” (ZFNs, TALENs, and CRISPR/Cas9) has made possible the widespread and unforeseen consequences of genetically engineering flora, fauna, and ourselves, and “Asilomar” once again became a rallying cry. Yet many[Nature Editorial Board] prominent[Ben Hurlbut] voices[Sheila Jasanoff, Kris Saha & Hurlbut] have pushed back on this metaphorical monolith, noting the 1975 meeting’s extremely insular nature, its structural bias wherein defining risk was left to scientists alone, and its rapidly diminishing usefulness as a model in the modern global context of science and human society.

Cognizant of these critiques—yet tied to the “mythic” Asilomar as one of its principal organizers—David Baltimore, chair of the organizing committee for the International Summit on Gene Editing, opened the meeting (somewhat less insular, still mostly invitation-based) with the following remarks:

…  a lot has changed since 1975. Science has become an increasingly global enterprise …  The public also has become more engaged in debates about science and scientific progress, and the new modes of rapid communication have provided novel platforms for these discussions. At Asilomar, the press participated with the understanding that nothing would be written about what was said until the meeting is concluded. Today, individuals will blog, tweet, and retweet messages about our discussions from within this very room and in real time. Thus our conversations will be widely disseminated, giving rise to real time commentary. [Webcast, Day 1, Part 1, t: ~1:05:00]

Indeed, the organizers of the meeting initiated the Twitter hashtag #GeneEditSummit, and a number of the reporters present at the D.C. meeting participated by replicating scientists’ talking points from the stage.

Center for Genetics and Society also livetweeted the three days of the conference, trying to highlight the critical concerns of a range of stakeholders, from Broad Institute Director Eric Lander:

 

to Sharon Terry, Genetic Alliance:

to Ruha Benjamin, Princeton University professor and author of People’s Science: Bodies and Rights on the Stem Cell Frontier:

Benjamin spoke on Day 3, as part of a panel called “Interrogating Equity.” Its presence on the agenda represented a welcome departure from many past meetings organized by scientists, but few of the scientists in attendance seemed to engage with the concerns it raised. During the “comments from the floor” period, CGS consultant Pete Shanks asked whether scientists in the room believed that analyses of the social and political implications of gene editing were just “rubbish”—and if so, could they please come to the microphone to say that so a civil dialogue between opposing views could materialize?  The panel’s moderator Françoise Baylis responded in part by illustrating the contours of the debate that she had discovered over the meetings’ three days:

For the first time at this meeting I’ve tried to follow what was happening on Twitter and to try to learn to contribute. I’m sure I’ve made mistakes along the way because I didn’t understand the technology, but I honestly had the experience of participating in two separate conferences, which I thought was interesting. That on the one hand there were conversations happening there, around issues to do with race, around issues to do with disability, that weren’t happening in the room and on the floor, so I think that’s an interesting idea to interrogate, why that is, and I think that may speak to structural issues where people feel capable or empowered to speak in some contexts that they’re more familiar with and used to… . [Webcast, Day 3, Part 1, t: Pete Shanks Q @ 1:40:05; Françoise Baylis A @ 1:43:58]

One of the many questions moving forward from this #GeneEditSummit is: what exactly did tweeting and retweeting accomplish for the sake of democratic deliberation of society-altering technologies? Did it impact the shape of the debate? Did it strengthen the showing of the public in the consideration of how to proceed? If the majority of the voices engaging on the widely disseminated Twitter platform were reporters and members of the scientific and academic research communities, what does this bode for engaging with the “wide range of perspectives” that was called for, among numerous others, by CGS’s Marcy Darnovsky before and at the meeting, UC Berkeley Professor Charis Thompson during the meeting, and the Summit’s organizing committee at the close of the meeting [see Pt. 4]?

Previously on Biopolitical Times:

Composite image via Wikimedia Pixabay





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

Posted by Elliot Hosman, Biopolitical Times on December 10th, 2015


Untitled Document

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.

####

[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.”

[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.”

[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.”

[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.”

[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.”

####

Previously on Biopolitical Times:

Image via /r/Science





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