Bioethics Commission To Continue Look Back In Next Meeting

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.

HGP-Write A Wish List In Plan’s Clothing

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.

About Those Government Reports That Sit On A Shelf

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.

Bioethics Commission Looking Retrospectively In Next Meeting

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.

InterAcademy Partnership Releases Responsible Research Guide

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.

Next Bioethics Commission Meeting Is Strictly An Audio Affair

The Presidential Commission for the Study of Bioethical Issues (Commission) will next meet on March 3 from 2 to 4 pm.  However, unlike its previous meetings, the March 3 gathering is strictly virtual.  It will be a teleconference open to the public, with the agenda and call-in number available on the Commission’s website at least one week in advance (by February 25).

The shorter length for the meeting suggests the agenda will be relatively light, and the Federal Register notice for the event notes a single topic.  Additionally, the meeting had at one point been scheduled to take place in Atlanta, Gerogia.

Continuing a theme of this Commission throughout its existence, this teleconference will cover the “ongoing development of pedagogical materials to facilitate the integration of bioethics into education in a range of traditional and non-traditional settings.”  The Commission has been building a suite of education resources throughout its tenure, and I expect that in its last months, absent rush requests from the President, the Commission will be working to further that work.

 

Defense Department Calls On American Psychological Association To Reconsider Ban

The New York Times is reporting that a Pentagon official has requested that the American Psychological Association (APA) reconsider its blanket prohibition on having its members participate in what it calls ‘national security interrogations’ at facilities like Guantanamo Bay in Cuba.  The ban is a result of an investigation into APA conduct that concluded that APA officials colluded with the Defense Department on torture techniques used by the U.S.  (See this timeline of APA activities related to this report.)

The ban was overwhelming approved (157-1) by the Association’s Council of Representatives in August 2015, but it has yet to be incorporated into the APA Code of Ethics.  There have been rebuttals to the independent report that focus on the Defense Department putting into place policies and procedures intended to prevent future abuses involving detainees.  They do not directly address the matter of APA collusion with the Department.

At the moment, the APA policy is only permitting member psychologists to work at Defense Department facilities in caring for military members and their families, for a third party protecting human rights, or directly for any detainees.

In the letter, Acting Principal Deputy Secretary of Defense for Personnel and Readiness Brad Carson argues against the ban for a number of reasons, and would like the opportunity to discuss revising the prohibition in order to minimize the licensing uncertainty that current exists for military psychologists and those providing psychological care to detainees.  That concern explains a lot of the language in the letter seeking clarification about what is a matter of policy and what is a matter of ethical conduct.

(Should the blanket prohibition be incorporated into the APA’s Code of Ethics, a document that influences the state licensure of psychologists, members participating in national security interrogations face the possibility of having their licenses revoked.)

Carson further argues that current Defense Department policy is consistent with the intent of the APA resolution to do no harm.  He suggests that APA guidelines need to be consistent on this point, focused on the well-being of the patient and not on courtroom evidence rules.  My interpretation is that Carson’s preferred perspective would make meaningless the APA policy, which allows for work with law enforcement due to the implicit Miranda and other Constitutional protections.

The APA policy specifically forbids participation at Guantanamo Bay except to provide care for military personnel.  It cites United Nations reports related to activities at Guantanamo to support it stance.  Surprising possibly nobody, the Defense Department notes that it is acting consistent with U.S. law and Supreme Court decisions, which disagree with the U.N. reports.

And I think here is where there might be the biggest pushback from the Association.  Part of the effort to revise policy was to demonstrate support of U.N. guidance on the humane treatment of detainees.  While members may be willing to find appropriate grounds to maintain ethical standards of detainee patient care, they may be unwilling to be seen as supporting policies inconsistent with U.N. guidance.

Throughout the letter, Carson seeks to distinguish between policy preferences and ethical standards.  But I think some members of the association will indicate that their ethical standards should dictate policy preferences.  Further stung by the impact of the collusion described in the independent report, enough APA members may be willing to stand firm on compliance with U.N. policy, and see the threat to detainee patient care as motivation for the Department of Defense to change its policies.

The fight, if there is one, will have two components.  Discussions between the APA and the Defense Department will take place, but changes in APA policy will be conducted through the membership (which has a section of military psychologists).  As it has taken the APA years to get to this point, a final resolution likely will not be quick.