Abstract
As scientific research pushes the boundaries of knowledge, new discoveries and technologies often raise ethical and social questions. Public responses vary from surprise, to unrealistic optimism about imminent new treatments, confusion, and absolute opposition. Regardless of the intent, the use of a precise gene editing tool on human embryos, such as CRISPR-Cas9, is an example of such a controversial emerging technology. Substantive disagreement about the appropriate research pathways and permissible clinical applications is to be expected. Many ethical concerns, especially related to genetic manipulation of human embryos, are rooted in deeply held moral, religious, or ideological beliefs that science alone cannot address. Today, more scientists and scientific societies as well as policy makers are calling for public and stakeholder engagement in developing guidelines and policies governing scientific practice. We conducted a critical interpretive review of the literature on public and stakeholder engagement in science policy development regarding emerging technologies to determine the ideals that should guide engagement efforts of entities developing recommendations or guidelines on policy for such technologies. We identify and describe five ideals. To illustrate possible applications of these ideals, we review the engagement efforts described in three reports on heritable human genome editing and assess those efforts in light of these ideals. Finally, we recommend possible avenues for engagement that would advance those goals.
Highlights
Scientific research and technology continue to push the boundaries of what we know and what we can do
We identify five ideals that should guide public or stakeholder engagement (PSE) efforts when developing science policy recommendations or guidelines on emerging technologies
We sought to answer the question: What ideals, norms, or principles should guide efforts to engage the public or stakeholders when developing science policy regarding controversial emerging technologies? The critical interpretive review methodology was more appropriate for addressing this question than a systematic review, a methodology designed to capture all relevant studies on an intervention to assess the intervention, because our focus was not comparing the effectiveness of specific PSE approaches or techniques (McDougall, 2015)
Summary
Scientific research and technology continue to push the boundaries of what we know and what we can do. These changes often raise new ethical and social questions. One example is CRISPR-Cas and its use in heritable human genome editing (HHGE). While discussions regarding HHGE date back for decades, many were relegated as ‘science fiction’ due to limitations in technological feasibility (Frankel and Chapman, 2001; Evans, 2002; Dresser, 2004). More common were discussions related to ethical issues associated with clinical uses of genetic technologies, such as gene transfer technology, that was not expected to alter the germline (King and Cohen-Haguenauer, 2008).
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