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.