According to its website:
“California's Stem Cell Agency was created in 2004 when 59% of California voters approved Proposition 71: the California Stem Cell Research and Cures Initiative. That initiative created the California Institute for Regenerative Medicine (CIRM) to fund stem cell research in the state. In addition to creating the agency, Prop 71 created a 29-member governing Board composed of researchers, business leaders and patient advocates.”
Somewhere along the way, CIRM had the good sense to hire Kevin McCormack as its Sr. Director of Public Communications and Patient Advocate Outreach.
Fortunately, Kevin McCormack prepared a summary of that workshop meeting. Here it is:
The meeting began with the hope that it would produce a strong, robust discussion of the issues surrounding the use of CRISPR to edit human embryos and to result in a series of recommendations that the Standards Working Group (SWG) could then forward to the CIRM Board on whether any changes needed to be made to our existing rules and regulations about funding such research.
It turned out to be a thoroughly fascinating day with some thought-provoking presentations and equally thought provoking questions from the audience, from scientists, social researchers and members of the public.
It quickly became clear that the discussion was going to be even more robust than we imagined and the issues raised were too many and too complex for us to hope reaching any conclusions or producing any recommendations in one day.
In the end it was decided that the most productive use of the day was not to limit the discussion at the workshop but to get those present to highlight the issues and questions that were most important and leave it to the SWG to then work through those and develop a series of recommendations that would eventually be presented to the Board.
The questions to be answered included but are not limited to:
1) Do we need to reconsider the language used in getting informed consent from donors in light of the ability of CRISPR and other technologies to do things that we previously couldn’t easily do.
2) Can we use CRISPR on previously donated materials/samples where general consent was given without knowing that these technologies could be available or can we only use it on biomaterials to be collected going forward.
3) Clarify whether the language we use about genetic modification should also include mitochondrial DNA as well as nuclear DNA.
4) The possibility that somatic cell gene editing may lead to inadvertent germ line editing
5) How do we engage with patient advocates and other community groups such as the social justice and equity movements to get their input on these topics – do we need to do more outreach and education among the public or specific groups and try to get more input from them (after all we are a taxpayer created and funded organization so we clearly have some responsibility to the wider California community and not just to researchers and patients)
6) As CIRM already funds human embryo research should we consider funding the use of CRISPR and other technologies that can modify the human embryo provided those embryos are not going to be implanted in a human uterus.
This was a really detailed dive into a subject that is clearly getting a lot of scientific attention around the world and is no longer an abstract idea but is rapidly becoming a scientific reality. The next step is for a subgroup of the SWG to put together the key issues at stake here and place them in a framework for another discussion with the full SWG at some point in the future.
Once the SWG has reached consensus their recommendations will then go to the CIRM Board for its consideration.
I hope this captures the flavor and essence of what happened today. It really was a fascinating discussion and the issues raised, and their complexity, highlighted why so many different groups around the world are wrestling with the potential, and pitfalls, of this new technology.