Tuesday, February 21, 2017

Release of the National Academies' Consensus Study on Human Genome Editing

The National Academies of Science, Medicine, and Engineering have jointly released their consensus study on Human Genome Editing: Science, Ethics and Governance.  The report was produced by a committee specifically created to consider this topic.   Here are links to either:

1. The report highlights, summarized in about 4 pages.  I recommend this!

2. The full report - it's over 200 pages.  You can download the full study from their website (you need to register to get the free PDF, but it's pretty painless) 

3. A one-page summary of the report.    

I can see that a "narrative" in the media coverage revolves around the report's cautious statement that human germline gene editing may be ethically OK, but: only in very specific disease-addressing situations; with appropriate oversight;  and some sort of public consensus/input.   In fact, this is probably the most contentious question the committee faced.   The committee clearly states that editing to produce enhancements, rather than to treat disease, is not recommended at this time.   On the other hand, somatic gene editing applications for treating diseases can be viewed essentially as technical improvements of "conventional" somatic gene therapies, for which the ethics and oversight issues have been dealt with for some years now.

There is abundant material in the full report and its summaries that calls for public input into the process of determining exactly what types of germline gene editing should be permitted.   For example, from the one-page report summary:  "Ongoing reassessment and public participation should precede any clinical trials of heritable germline editing".   This is a very clear call for public feedback. Nevertheless, at least some responses seem to argue that this sentiment was left out of the report.  I believe this to be purposefully misleading.  The report committee was co-chaired by a noted biomedical ethicist and regulatory expert.  Moreover, the committee has several additional bioethicists in its roster, who all are well acquainted with the need for communication between the public, scientists and policymakers in order for sensible policies to be created.    Furthermore - the report contains an entire chapter entitled "Public engagement".  !    

It is clear that the committee, and most scientists I know, feel strongly that any process of establishing policies, regulations or laws governing germline genome editing will absolutely require public engagement and feedback.

Friday, May 13, 2016

Policy forum paper in Science on germline gene editing: "Editing policy to fit the genome?"

Back in late January, Rosari Isasi et al. published a policy forum paper in Science that discussed the issues surrounding genome editing policies around the world.  Key points discussed include the differences between "permissive" and "restrictive" viewpoints, whether restrictions on clinical applications also apply to research - and how vague legislative language sometimes makes this distinction unclear - and, how thresholds for acceptability have been applied in related contexts.

Nice maps are given that indicate the general level of regulation around the world for this issue and for related topics such as preimplantation diagnosis.    

Monday, February 1, 2016

UK approves gene editing of human embryos for in vitro research purposes. (NOT for implantation/procreation).

The HFEA has approved an application from UK reserachers to perform specific gene editing experiments in human embryos for research purposes.  The embryos will not be cultured beyond the blastocyst stage (a small ball of ~250 cells).  The purpose of this research is to examine the development of cells that form the placenta and other tissues that support embryo growth.  This sort of research may lead to better understanding of why some miscarriages occur.

Reports from various news outlets:

BBC News

The Guardian

Washington Post

Friday, December 4, 2015

Statement released by the International Summit on Human Gene Editing, and related news links. #GeneEditing #CRISPR

Here is the link to the International Summit on Human Gene Editing Organizing Committee's statement on gene editing.


It's a fairly brief statement in comparison to the Hinxton report, but it makes its points.   Some may be surprised that an outright moratorium - or even more permanent restrictions - on germline gene editing were not called for specifically in the statement.   Instead the tone leaves the door open.  I think this is in keeping with the idea that it is conceptually possible that at some point in the future, germline modification might be safe and effective enough for preventing certain diseases that it would be ethically permissible - at least in come cases.

However, there are certainly strong notes of caution in the document - in particular, that germline gene editing to produce actual babies is clearly still too risky at this time.  At the same time, the statement leaves the door open for research in embryos that may shed light on these issues, while also possibly be very beneficial from a basic science perspective.

News reports:

The Guardian:  Summit rules out ban on gene editing embryos destined to become people.

LA Times: International gene editing conference declines to ban eventual use in humans.

Nature: Gene-editing summit supports some research in human embryos.

Reuters: Gene summit organizers urge caution on human gene editing.

Finally, here's a link to a good piece in STAT about the whole summit.