Human Genome Editing Science, Ethics, and Governance (2017) / Chapter Skim
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7 Public Engagement
7 Public Engagement
Pages 163-180
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From page 163... ...
At the Asilomar Conference in February 1975, an international group of scientists discussed the use of recombinant DNA and decided strict controls should be placed on its use (Berg et al., 1975)
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From page 164... ...
. Some scholars have argued that human genome editing has raised, and will continue to raise, ethical, regulatory, and sociopolitical questions that go well beyond discussions of technical risks and benefits identified by 1 21st Century Nanotechnology Research and Development Act, Public Law 108-153 (December 3, 2003)
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From page 165... ...
. These scholars argue that the risks and benefits associated with human genome editing should not be defined solely by the scientific community, and that a comprehensive understanding of risks and benefits will require broad public debates that are highly inclusive with respect to the range of voices and how relevant concepts are defined.
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From page 166... ...
. Four such factors are particularly noteworthy for engagement efforts surrounding human genome editing.
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From page 167... ...
Based on these broad principles, public engagement efforts typically are built around one or more of the following processes (Rowe and Frewer, 2005) : • Communication/information -- ensuring that decision-relevant infor mation (including ethical, regulatory, and political considerations)
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From page 168... ...
-- the notion that it is possible (or desirable) to increase public acceptance of new technologies by closing knowledge deficits and building relevant scientific literacy among nonexpert audiences.
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From page 169... ...
, subregulatory, legally nonbinding guidance or agency practices apply, some of which also are subject to formal public comment. Lastly, for new research such as genome editing, there can be additional nonbinding review by the National Institutes of Health's (NIH's)
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From page 170... ...
. At the federal level in the United States, opportunities for public engagement exist but tend to be limited and passive, and not the type of fuller public engagement that may be appropriate for an important new technology such as human genome editing, especially as potentially applied to the germline.
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From page 171... ...
. The FDA's advisory committee meetings, as well as its more generalized meeting mechanisms, would be available for discussion of therapies that depend on genome editing, and they might be particularly useful for discussion of products aimed at or likely to be used off-label for "enhancement." National Bioethics Commissions Many nations have bodies to provide advice to their governments or to provide venues for public conversation, and such entities exist on every continent except Antarctica.
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From page 172... ...
Common features of these commissions include opportunities for public testimony, open meetings, the availability of transcripts of commission discussions, and the evident effect of this public participation and observation on both the decisions made at the meetings and the implementation of the resulting recommendations. Although agencies often are restricted by law with regard to what they can consider in their decisions, these venues provide an important outlet for broader considerations that, if necessary, can lead to legislative changes in agency mandates or regulatory approaches.
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From page 173... ...
TABLE 7-1 Attributes of Public Engagement: Selected Examples United Kingdom Denmark France • Solicits entities outside of • Longstanding • Citizen panels bring the government, especially experience in public attention to new social specialists in communication consultation demands and needs for and Web resources, to • Emergence of ethical new legal approaches to create its public consultation issues raised by citizen novel technologies structure groups that policy • Widespread media • Single-issue focus in its makers have not dissemination of panel consultation considered discussions • Wide variety of ways citizens • Report content taken • Proliferation of other provide input, including into consideration by forums for discussion workshops, meetings, online policy decision makers subsequent to the public questionnaires, and interactive via an independent consultation website forums agency that informs and advises the government For example, Denmark has a longstanding tradition of consensus conferences for which broad representation is sought, and whose results are 3 21 CFR § 56.107.
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From page 174... ...
. Although no country can fully satisfy all the objectives of public engagement in the realm of human germline genome editing, one widely shared objective is to strive to "enrich and expand the scope of traditional debate between experts, politicians, and interested parties by communicating citizens' views and attitudes on controversial technologies" (Scheufele, 2011, p.
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From page 175... ...
LESSONS LEARNED FROM PUBLIC ENGAGEMENT ACTIVITIES Public engagement efforts are crucially important for guiding societal and political debates about the social, ethical, legal, and political aspects of applications of human genome editing. Given the infrastructures already in place to engage the public, as well as the general principles for engagement discussed in this chapter, the committee sees particular value in an approach that uses different processes for engagement for different types of questions surrounding genome editing.
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From page 176... ...
Instead, they need to be systematically pretested using empirical social science to ensure that they minimize a priori biases and allow for inclusive, broad discussions that are not constrained artificially to the technical or scientific aspects of the subject. MOVING FORWARD Current infrastructure in the United States adequately includes public input for current modes of gene therapy, including both commercially and publicly funded basic research involving human genome editing.
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From page 177... ...
Experiences with the genome initiative's program for including consideration of "ethical, legal, and social issues" as part of its overall funding of scientific research, and experiences with the Centers for Nanotechnology in Society, funded by the National Science Foundation, might provide useful frameworks for structuring similar research agendas or funding programs for public engagement for genome editing.4 CONCLUSIONS AND RECOMMENDATIONS Efforts to advance human medicine through genome editing will be strengthened by public engagement informed by technical experts and by social scientists who undertake systematic public opinion research, develop appropriate communication materials, and minimize artificial biases or constraints that would hinder discussion and debate. 4 See https://www.genome.gov/elsi (accessed January 30, 2017)
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From page 178... ...
Furthermore, the complex issues surrounding enhancement will require an ongoing public debate to inform regulators and policy makers about the individual and societal values to be placed on the benefits and risks before clinical trials for such enhancement interventions could be authorized. The practices and principles developed for effective and inclusive public engagement in other emerging areas of science and technology provide a valuable base to inform public engagement on genome editing.
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From page 179... ...
PUBLIC ENGAGEMENT 179 RECOMMENDATION 7-5. When funding human genome-editing research, federal agencies should consider including funding for research aimed at • nderstanding the sociopolitical, ethical, and legal aspects of u editing the human germline; • nderstanding the sociopolitical, ethical, and legal aspects of u uses for genome editing that go beyond treatment or preven tion of disease or disability; and • valuating the efficacy of efforts to build public communi e cation and engagement on these issues into regulatory or policy-making infrastructures.
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