Thread by @sburall

Thread 2

1/ Next panel starting - looking at "Governance and its Gaps", involving Ben Hurlbut, Dana Carroll, Alta Charo, Dafna Feinholz, @laurencelwoff, Nora Schultz - sorry if I've missed twitter handles #CrisprConsensus

@laurencelwoff 2/ We're being polled online on the questions "what are the most/ least useful forms of public engagement"

Sorry, not a good question, useful for what purpose? They all have their place? #CrisprConsensus

@laurencelwoff 3/ Ben Hurlbut starts panel off as the moderator. Do we spend enough time asking what questions need asking of the public, or learning from other areas. This panel will look at this. #CrisprConsensus

@laurencelwoff 4/ Starting with @laurencelwoff from the Council of Europe, focuses on the protection of human rights, and in 80s started focusing on biomedicine, bring both benefits, but bring concerns about the possible use and misuse of the technology. #CrisprConsensus

@laurencelwoff 5/ COE sees progress and protection of human rights as being intimately linked. Led to Oviedo Conventionhttps://www.coe.int/en/web/bioethics/oviedo-convention #CrisprConsensus

@laurencelwoff 6/ this convention commits signatories to a public debate about biomedical innovations #CrisprConsensus

@laurencelwoff 7/ Next up is Alto Charo focusing on experience of developing principles for governance.

She's drawing on the wider history, probably easier if I just point you here innovativegenomics.org/overview/ #CrisprConsensus

@laurencelwoff 8/ She notes that the online poll we filled in earlier about types of engagement didn't include voting "which is the most direct form of all" > for me, voting focuses very much on immediate concerns for voters; it's bad at engaging on future visions #CrisprConsensus

@laurencelwoff 9/ she's exploring the challenge of focusing governance of these technologies in existing institutions. Risk is that if ends up in places like FDA then focus is on risks and not the wider concerns, such as religious objections, for eg> but +1 from me #CrisprConsensus

@laurencelwoff 10/ She's noting that much of the work on gene editing is very focused on experts trying to make sense of the science, and how law and policy is developing, and there is no space for public dialogue #CrisprConsensus

@laurencelwoff 11/ key technical q: how do we know when we know enough to judge the risks, though there are ethical issues embedded in this; what is safe enough? #CrisprConsensus

@laurencelwoff 12/ she's now explaining why individual governments don't have sovereignty over this issue, if you ban it, what do you do if a citizen goes elsewhere for treatment, if you allow it, how do you stop yourself becoming a 'risk haven'? #CrisprConsensus

@laurencelwoff 13/ she's noting that public debate does have an impact, speaking to a right wing senator who was against stem cell research until a constituent with a son with a disability who challenged him >this is a narrow form of impact though, implies engagement must #CrisprConsensus

14/ >this is a narrow form of impact though, implies engagement must fit with the politics of our representatives, and risks cutting out more challenging voices, either of the majority, or vulnerable communities. #CrisprConsensus

15/ Next up is Dafna Feinholz who is from Unesco but not talking on behalf of Unesco.

Unesco is much more than protecting heritage, has the same principles for science: to foster international collaboration. It's part of UN so underpinned by Human Rights #CrisprConsensus

16/ So since early 90s UNESCA has a Bioethics Panel, aiming to bring a body of international experts which is multidisciplinary, to simulate the real world and identifying the ethical challenges arising, to advise governments on how to deal with it #CrisprConsensus

17/ Ben noting that one of the underlying threads is a set of questions on what the shared values are. @noraschultz being asked to reflect on this from a national, German, perspective #CrisprConsensus

@noraschultz 18/ Destruction of embryos for the production of stem cells is banned in Germany, but in early 90s debate arose of whether cell lines created in this way could be imported. This led to the creation of a national bioethics committee #CrisprConsensus

@noraschultz 19/ I'm skimming considerable detail here ... #CrisprConsensus

@noraschultz 20/ currently mapping arguments and the ethical considerations that relate to this with the aim of supporting public debate, to support people to understand where different debates and arguments are coming from

@HelenPallett @jasondchilvers interesting? #CrisprConsensus

@noraschultz @HelenPallett @jasondchilvers 21/ next up Dana Carroll who sits on the International Commission on the Clinical Use of Human Germline Genome Editing #CrisprConsensus

@noraschultz @HelenPallett @jasondchilvers 22/ "I am a genome editor" < sounds like it's confession time! Though worth noting he really does go way back to the start of these developments... #CrisprConsensus

@noraschultz @HelenPallett @jasondchilvers 23/ The commission is charged with engaging with the ethics and governance of human germline editing, should the public believe it is acceptable > if I properly followed what he said. but raises questions of how we'll know if the public consent #CrisprConsensus

@noraschultz @HelenPallett @jasondchilvers 24/ > there's risk that this is seen as a simple yes/ no question. Risk is that it is a one way gate, rather than consent being contingent and dynamic #CrisprConsensus

@noraschultz @HelenPallett @jasondchilvers 25/ Ben Hurlbut probing how well the commission is engaging

A: deciding who they will hear from is an ongoing conversation, they are deciding what sorts of engagement they need #CrisprConsensus

26/ > how can they possibly know who they need to hear from? Even for just the US and UK, the range of stakeholders is huge! There is a huge risk they'll not have any idea of minority views #CrisprConsensus

27/ we're getting deep into issues of how you evaluate risk vs benefit because one, the benefits might be immediate, the risks dispersed and falling on others. The answers depend on the regulatory regime #CrisprConsensus

28/ Q: how is meaningful dissent being incorporated, or will it just be withdrawal of consent (as with GMO I think he said) > this is an important question and relates to one of my comments earlier in this thread #CrisprConsensus

29/ @noraschultz highlights some procedural ways you might deal with this in ethics committees, for example. Important, but I think the question is wider, especially if experts are deciding who should and should not be engaged/ listened to #CrisprConsensus

@noraschultz 30/ Critical q from online, which is how we will govern this internationally. >Not sure there's an answer out there yet #CrisprConsensus

@noraschultz 31/ @laurancelwoff asking if we are even defining things the same. Ie public engagement (debate in CoE language) and the question which the public should be asked > we definitely aren't defining things the same and makes global governance much harder #CrisprConsensus

@noraschultz 32/ what does public opinion mean in your governance system is a critical question within this says Alta Charo >agree. And it's important to say that there isn't one answer here even in individual countries, its different in health systems than health research eg #CrisprConsensus

@noraschultz 33/ @noraschultz points to the @Sciencewise process for mitochondrial transfer as one way to go, but notes it was a very narrow question and gene editing very different.

sciencewise.org.uk/projects/mitoc… #CrisprConsensus

@noraschultz @Sciencewise 34/ Dana Carroll has tried to illicit dissent, but need to be wary of loudest voices, and we also need to be wary of raising hopes from desperate families which leads to a push to allow the use of technology in areas where wider society might be uncomfortable #CrisprConsensus

@noraschultz @Sciencewise 35/ it's lunch time, you'll be pleased I'm going to disappear for a while #CrisprConsensus