From its inception, genomics has been a speculative endeavor, fixated on a far-off horizon that would deliver on the promise of targeted diagnostics and individualized therapeutics (Fortun 2008). M...

Given some of the various possible impacts of clinical germline editing, we can expect robust disagreement about how best to regulate it. One can point to examples of the promise of editing: “rough...

Public deliberation has increasingly become the gold standard for citizens’ participation in the governance of science and technology, with a growing body of research suggesting that deliberative p...

The possibility of editing the genomes of human embryos has generated significant discussion and interest as a matter of science and ethics. While it holds significant promise to prevent or treat disease, research on and potential clinical applications of human embryo editing also raise ethical, regulatory, and safety concerns. This systematic review included 223 publications to identify the ethical arguments, reasons, and concerns that have been offered for and against the editing of human embryos using CRISPR-Cas9 technology. We identified six (...) major themes: risk/harm; potential benefit; oversight; informed consent; justice, equity, and other social considerations; and eugenics. We explore these themes and provide an overview and analysis of the critical points in the current literature. (shrink)

From their interpretation of the Australian Citizens’ Jury on genome editing, Scheinerman (2023) concludes that inclusive and diverse deliberative processes of public engagement have salient benefi...

Conley and colleagues (2023) conduct a fascinating analysis of how influential organizations in the global governance of human genome editing debate conceptualize and perform public engagement. Whi...

In this commentary for Conley et al. (2023), we seek to bridge the gap that, unfortunately, still often exists between debates in Science & Technology Studies (STS) and Bioethics. We believe that t...

In their target article, Conley et al. (2023) appropriately highlight the ongoing conceptual and practical opacity of public engagement (PE) in the translation of human gene editing (HGE) (Conley e...

Conley et al. (2023) analyze the attempts at public engagement (PE) by five governance groups. These projects were conducted by organizations that endorse both the goals and values of PE. The autho...

While somatic cell editing to treat disease is widely accepted, the use of human genome editing for “enhancement” remains contested. Scientists and policy-makers routinely cite the prospect of enhancement as a salient ethical challenge for human genome editing research. If preventive genome editing projects are perceived as pursuing human enhancement, they could face heightened barriers to scientific, public, and regulatory approval. This article outlines what we call “preventive strengthening research” (or “PSR”) to explore, through this example, how working to strengthen (...) individuals’ resistance to disease beyond what biomedicine considers to be the human functional range may be interpreted as pursuing human enhancement. Those involved in developing guidance for PSR will need to navigate the interface between preventive goals and enhancement implications. This article identifies and critiques three of these ideas in the interest of anticipating the wider emergence of PSR and the need for a normative approach for its pursuit. All three “candidate criteria” merit attention, but each also faces challenges that will need to be addressed as further research policy is developed. (shrink)

ELSI efforts long have been troubled by critiques that they privilege scientific frameworks and grant scientists the power to set ethical agendas. As the first director of the Human Genome Project’...

Scheinerman (2023) proposes a Citizen’s Jury on human germline genome editing (HGGE) to promote more inclusive public engagement, agenda setting and governance. She argues these juries should work...

Despite what many critics see as an inability to deliver much in the way of therapeutic value (Hunter and Drazen 2019), genetics remains a bottomless source of fascination, trepidation, and reflect...

In a recent Target Article Naomi Scheinerman (2023a) has offered an important and compelling call to institutionalize popular participation for heritable genome engineering through the inclusion of...

In “The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research,” Conley et al. raise (2023) important critiques of several public engagement practices in the re...

The authors of the ELSIcon special issue have advanced the conversation on ethics and genetics. Nevertheless, we have some concerns. Here, we respond specifically to Conley et al. (2023). We choose...

Conley and colleagues (2023) explore how calls for broad public engagement (PE) in the case of heritable human genome editing are being put into action, reviewing the activities of five different i...

The timing of this special issue of AJOB probing whether public engagement (PE)1 might help achieve equity in genomics is no coincidence. While many issues discussed by the authors are not entirely...