The Presidential Commission for the Study of Bioethical Issues (Commission) next meets on August 31 in Philadelphia. The Commission recently released a draft agenda for the meeting, which will focus on the role of national bioethics advisory panels, both in the U.S. and around the world. (As usual, you can access a webcast of the meeting from the Commission website.)
This topic has been a focus for the Commission of late, and with no additional meetings scheduled (as of this writing), a report on this topic (formal or not) may be the last one from this Commission. Those interested in a peak at what the Commission might release should look at the History section of the Commission website. It’s focused on the U.S., but the Commission has cast a broader net in its study of the topic. Hopefully some of it’s work on advisory bodies outside of the U.S. gets a broader audience before the Commission disbands.
I’ll take time to be more reflective of the Commission’s work after the August meeting (and any subsequent meetings, should there be any). But 26 meetings since 2010 and at least 10 substantial reports reflect a significant output from the Commission members and staff.
In 2015 The National Institutes of Health ended its support for invasive research on chimpanzees, continuing the retirement of federally owned research chimpanzees it started in 2013. In 2015 the Fish and Wildlife Service reclassified research chimpanzees as endangered, further restricting chimpanzee research under a permitting system.
The research chimpanzees retired by the NIH (a process that has not gone well) have been guaranteed spots in a Louisiana sanctuary. Research chimpanzees not held by the government do not have such a guarantee, but a reserve in Georgia has been redeveloped to fill that need. It’s not the only option for those 300 or so chimps that need a home. They could retire in place, or be transferred to other research centers or zoos.
Project Chimps spearheaded the effort, which should help address this need. The sanctuary
has taken its first group of chimps, and expects to host over 250 animals.
The next meeting of the President’s Commission for the Study of Bioethical Issues will take place August 31 in Philadelphia. Building off part of the work in its last meeting, the Commission will continue its discussion of the impacts of bioethical advisory bodies, with an eye toward recommendations for future bodies.
While there is no agenda available as yet, the meeting comes after the Commission concluded a request for comment from the public on this topic. Regrettably, I cannot find the submitted comments online, but I would expect the Commission to discuss them during the August meeting.
As more information becomes available, I’ll post about it. But given my oversight of the May PCAST meeting, I don’t want to let this one slip through the cracks.
In the latest issue of Science is an immodest proposal from a number of genetic researchers for what they call The Genome Project – Write, or HGP-Write. The name evokes a kind of CD recording media while staking ground for what would be a groundbreaking achievement – a dramatic reduction in the cost of engineering and testing large genomes (up to 100 billion base pairs) by over 1000-fold in the next ten years.
If I understand the proposal correctly – which is questionable as this reads more like the first draft of a roadmap rather than a project proposal – the ultimate goal of synthesizing a human genome would be accomplished after a great deal of work at smaller scales. But widespread genome synthesis is still quite new. For instance, the CRISPR suite of tools for more targeted genome editing are still under scrutiny for how they are being used and questions remain unanswered about how they should be used.
The proposal comes soon after a private meeting involving many of the authors to discuss HGP-Write. The closed-door nature of the meeting and relatively small numbers involved prompted concerns and likely led to what one of the principals, George Church, calls a misunderstanding over what the project intends. While genome synthesis is the goal, according to Church it is not intended to create humans out of whole cloth.
I think misunderstandings like this will make it harder for the project to get the $100 million in research commitments it seeks for 2016. If HGP-Write wants to avoid some of the pitfalls that have faced dramatic technology changes such as genetically modified organisms, future meetings should be more public, and the conversations about the project need to be thoughtful and thorough about future applications and implications of the changes they want to make happen.
A short outline of HGP-Write is the start of the beginning, not the beginning of a project.
Today (early Thursday UK time) Sense About Science, a UK charity focused on public access to and understanding of scientific evidence, released a report it commissioned about UK government-commissioned research (H/T ScienceInsider). The report was also supported by the JRSST Charitable Trust.
The focus of the report is not on scientific research funded by the UK government in general, but on studies commissioned on research that would inform policy. After press reports claiming delay or suppression of research that could be politically awkward, Sense About Science asked Sir Stephen Sedley a former judge in the Court of Appeal, to conduct an inquiry.
There are to big problems, and both seem to me to be something that any country’s government – whether well-intentioned or negligent – could have. The main problem for me is that the UK government does a poor job tracking and making accessible the research for policy it does commission. Only 4 of the 24 UK government departments have a research database for this kind of report, and 11 departments were unable to provide a list of research they had commissioned.
Sir Stephen noted that the rules governing the publication of this research is similarly inconsistent across departments and relatively susceptible to manipulation so that commissioned research could easily be gathering dust on office shelves. He recommends that there be a central government register for this research, and that it be accessible to the public. Expect Sense About Science to make this a key issue moving forward.
I think this would be an excellent idea for the U.S. to follow. I do not think that the Office of Science and Technology Policy (OSTP) would be a good place for this register, primarily because the proposed register is for all agencies, and not just those with which the OSTP has a long-standing relationship. I think it would be better suited for the Government Accountability Office, the Office of Management and Budget, or a comparable agency with cross-government responsibilities and a history of collecting information and making it available for public review and analysis.
The next meeting of the Presidential Commission for the Study of Bioethical Issues (Commission) will be in Washington, D.C. on May 3. There is one more Commission meeting scheduled after the May meeting, and that may be the last Commission meeting before it finishes its work (and President Obama leaves office).
I base that in part on this Federal Register notice the Commission released last month (which states the Commission has two more meetings) and on the agenda for the May 5th meeting. That agenda is focused on the past, present and future influence of national bioethics advisory bodies. The Commission will discuss the topic with several academics and the head of the Commission’s Mexican counterpart, CONBIOÉTICA.
The Commission is also interested in input from you. The Federal Register notice the Commission released last month was a request for comments on:
- The advantages and disadvantages of different models for national bioethics advisory bodies, e.g., standing or temporary, narrowly or broadly focused (examining one topic or issue or a variety of issues);
- The lessons we can learn from national bodies in other countries to inform how U.S. bodies might work;
- The influence of national bioethics bodies on bioethics as a field; other academic fields, such as science, medicine, and technology; and public policy;
- The future of national bioethics advisory groups in the United States.
Comments must be received by July 1.
Presumably the Commission is consulting with the International Network for Governmental Science Advice (INGSA), I certainly think that INGSA would be interested in the comments and any reports or other documents to come from them and the meeting on May 5th.
Earlier this month the InterAcademy Partnership, a coalition of world science academies, released a guidebook on conducting responsible research. This report follows the IAP’s 2012 report (released with the InterAcademy Council) on responsible research and was written by the same committee.
(In March, the InterAcademy Partnership will be relaunched as a combination of the InterAcademy Council, the present InterAcademy Partnership, and two other international science advisory bodies. It’s likely to happen during the InterAcademy Partnership international conference going on now in South Africa.)
This new report builds on the general principles for responsible research outlined in the 2012 report, as well as that report’s recommendations on how scientists, students, funders, policymakers and other stakeholders can provide the foundation for responsible research. This new report is more of a practice-oriented, day-to-day guidebook on how to conduct responsible research (including public engagement) in ways consistent with the principles outlined in the 2012 report. It is not intended to be *the* resource on conducting responsible research, but a resource, especially for training and educational purposes.
Policy-oriented readers may wish to give additional attention to Chapter 10, which covers communicating with policymakers and the public. It takes care to note the different kinds of advice that scientists may be called to provide policymakers, noting the work of the Intergovernmental Panel on Climate Change and the L’Aquila earthquake in explaining the different and sometimes competing pressures scientists face when presenting work in the public sphere.