hp:// ... · Genomeeding:7factsabouta& revoluonarytechnology@Nature)...
Transcript of hp:// ... · Genomeeding:7factsabouta& revoluonarytechnology@Nature)...
CRISPR/Cas 9 : to use or not to use?
Prof. Effy Vayena, Health Ethics and Policy Lab, EBPI, UZH @effyvayena
hGp://www.techinsider.io/the-‐age-‐of-‐geneLcally-‐engineered-‐animals-‐has-‐arrived-‐2015-‐6
QuesLons
• Is it morally permissible to engage with applicaLons of this technology (human, animals, plants)?
• How do *we* judge and decide that?
• What do we do between now and when we have a decision?
Genome edi)ng: 7 facts about a revolu)onary technology @Nature
1. Just one published study describes genome ediLng of human germ cells. 2.The law on ediLng human germ cells varies wildly across the world. 3.You don’t have to be a pro to hack genomes. 4.Cas9 is not the only enzyme in town. 5. Pigs are on the front line of genome-‐ediLng experiments. 6.Gates, Google and DuPont want a piece of the genome-‐ediLng acLon. 7. The CRISPR–Cas9 system is at the centre of a patent row.
Nature 526, 18 (01 October 2015) doi:10.1038/nature.2015.18448
hGp://www.technologyreview.com/news/542616/first-‐gene-‐edited-‐dogs-‐reported-‐in-‐china/
David Scharf/Corbis
“GMO Sapiens”
On IVF
"All hell will break loose, poliLcally and morally, all over the world.” James Watson, quoted in “The Embryo Sweepstakes,” New York Times, September 15 1974
” If CRISPR helps unravel the mysteries of auLsm, contributes to a cure for a form of cancer, or makes it easier for farmers to grow more nutriLous food while reducing environmental damage, the fears, like the many others before them, will almost certainly disappear.” The New Yorker
“I have never said this in public, but it will show you where my psyche is,” she said. “I had a dream recently, and in my dream [X] had come to see me and said, ‘I have somebody very powerful with me who I want you to meet, and I want you to explain to him how this technology funcLons.’ So I said, Sure, who is it? It was Adolf Hitler. I was really horrified, but I went into a room and there was Hitler. He had a pig face and I could only see him from behind and he was taking notes and he said, ‘I want to understand the uses and implicaLons of this amazing technology.’ I woke up in a cold sweat. And that dream has haunted me from that day. Because suppose somebody like Hitler had access to this—we can only imagine the kind of horrible uses he could put it to.”
Jennifer Doudna quoted in “The Gene Hackers”, The New Yorker, Nov. 16 2015
Key arguments
IllustraLon by Todd St. John
*“known unknowns and unknown unknowns” Nature of risk ProporLonal to benefit
Is it morally jusLfied to take the risk
in light of so many unknowns?
«we are human because of the interplay of many biological, historical, and cultural determinants, which preserve the feeling of our fundamental unity and nourish the richness of our diversity. This is why the human genome is one of the premises of freedom itself and not simply raw material to manipulate at leisure. […] What is the heritage of humanity entails sharing both responsibiliLes and benefits» UNESCO
Is it morally permissible to modify the human genome?
Human Nature
“IntervenLons on the human genome should be admiGed only for prevenLve, diagnosLc or therapeuLc reasons and without enacLng modificaLons for descendants.” The alternaLve would “jeopardize the inherent and therefore equal dignity of all human beings and renew eugenics”
hGp://www.un.org/apps/news/story.asp?NewsID=52172#.VlxXzaI9Vpg”
Nuffield Council of Bioethics
“Human beings have two basic kinds of emoLonal relaLons to nature: graLtude and a sense of peace, on the one hand, terror and sLmulaLon on the other.” Bernard Williams
“Human nature is what gives us a moral sense, provides us with the social skills to live in society, and serves as a ground for more sophisLcated philosophical discussions of rights, jusLce and morality"
Francis Fukuyama
• “... Only with geneLc engineering aiming at selecLon and at the modificaLon of traits, as well as the research required for such goals and geared to future geneLc treatment... do challenges of a new order arise. They imply the licence to control the physical basis which “we are by nature”... this extension of control of our “inner” nature is disLnguished from similar expansions of our scope of opLons by the fact that it “changes the overall structure of our moral experience.”
Habermas J (2003) The future of human nature (Cambridge: Polity)
The slippery slope
hGp://sciencevibe.com/2015/03/20/geneLcally-‐designed-‐babies-‐are-‐within-‐reach-‐should-‐we-‐do-‐it/
The consent of those to be born
"ethical issues presented by altering the germline in a way that affects the next generaLon without their consent” Francis Collins, NIH
Become beGer
• Moral obligaLon to make beGer humans (Savulescu)
• Is it morally superior to “naturally” pass on mutaLons that cause suffering? (Evans)
To date, the weight of reasons favours conLnuing gene ediLng research, rather than banning it. Those who believe that gene ediLng research should be banned or discouraged need to explain why this technology needs to be treated differently to other technologies and other reproducLve pracLces. Moreover, they need to explain how the expected risks outweigh the expected benefits, and why the risks cannot be appropriately managed with more specific legislaLon.
Savulescu et al. Protein Cell. 2015 Jul; 6(7): 476–479.
”just as jusLce delayed is jusLce denied, so therapy delayed is therapy denied." (John Harris)
hGp://www.theguardian.com/science/2015/dec/02/why-‐human-‐gene-‐ediLng-‐must-‐not-‐be-‐stopped
PragmaLc arguments
• DemocraLzaLon of gene ediLng • Someone will do it • Bioterrorism • Public outcry • Harsh regulatory response
hGp://www.techinsider.io/the-‐age-‐of-‐geneLcally-‐engineered-‐animals-‐has-‐arrived-‐2015-‐6
hGps://www.youtube.com/watch?v=TWthRz-‐0T18
• PrecauLonary principle
• Liberal self-‐regulaLon
• Proceed with cauLon and oversight
Moratorium? Lanphier et al. (2015) state: In our view, genome edi9ng in human embryos using current technologies could have unpredictable effects on future genera9ons. This makes it dangerous and ethically unacceptable. Such research could be exploited for non-‐therapeu9c modifica9ons.
A voluntary moratorium in the scienLfic community could be an effecLve way to discourage human germline modificaLon and raise public awareness of the difference between these two techniques.
The process
“But such a consensus would only be the start of a broader discussion, Cicerone cauLons. Eventually the health industry, disease lobby groups, members of the public and governments of the many naLons involved, will need to feed into decisions. “As much work as we’ve put into this meeLng,” Cicerone says, “it really is only a first big step.”
Nature doi:10.1038/nature.2015.18879
• There will be reasonable disagreement on gene ediLng.
• Public debate must take place, and we have an obligaLon to enable and facilitate it.
• This debate is both scienLfic and societal. • PrecauLon vs permissive is not the only way to resolve this issue. Need more granularity.
• CauLon is prudent, so is being imaginaLve. • InnovaLon that contributes to common goods is valuable.
• A global governance model (so~ law) would be a good starLng place.