About this Research Topic
CRISPR gene editing is widely regarded as one of the most important leaps in biomedical and agricultural research, with applications in developing medical treatments and agricultural products. While the prospects are certainly exciting, bioethicists and critical scientists have expressed concerns, particularly regarding human germline editing and the recent development of somatic genome therapies. Attempts to apply CRISPR to treat inherited genetic diseases, remove health risks due to genetic traits, or enhance certain genetic traits are feared to pose disproportionate risks for patients and members from marginalized groups. Additionally, the prospective high costs of somatic therapies raise concerns about accessibility for less affluent groups of patients (see recent advances in the CRISPR-based therapy of sickle cell disease). Given these potential downsides, there is a widespread call for globally unified policies on human genome editing to responsibly pave the way for clinical applications and improve patient care.
This Research Topic aims to address ongoing interdisciplinary debates in genome editing, bioethics, and policymaking, with a focus on the theoretical assumptions, discursive formats, and practical organization of deliberative processes in policymaking concerning human genome editing via CRISPR/Cas and comparable endonucleases.
In the context of interdisciplinary debates on the applications of CRISPR, three general questions emerge for biomedical policymaking:
1. How can we develop a morally justified, democratically legitimate, socially responsible, and economically viable global research policy on human genome interventions?
2. How can we implement policies on human genome interventions at international, national, and institutional levels?
3. How can we enforce these policies in particular research settings?
While these questions are often debated by renowned experts, those who might be affected by misregulation only play a marginal role in the deliberative processes behind research policies. This Research Topic aims to bring together voices from disability studies, feminism, critical race studies, critics of economic disparities, animal welfare and animal rights groups to explore the nature, viability, and practical details of inclusive policymaking for CRISPR-based human genome editing.
Topics of particular interest include, but are not limited to, the following:
• What is the current state of research regarding CRISPR-based human genome editing? What clinical research is especially relevant in the immediate future? What diseases affecting marginalized groups of patients have been neglected to far?
• Are there gaps in human genome research datasets that are important to genomic research? If so, what are the causes for this imbalance, and what might be the best response? Would calls for more raw data from non-Western individuals give rise to concerns about benefit sharing, privacy, trust, and so on?
• Who is interpreting the data, and whose perspectives are being considered in the background?
• What are the consequences of specific regulatory boundaries on genome editing for specific vulnerable groups?
• How prominent or (in)visible is research led by, or focusing on, marginalized groups in the current human genome editing literature, policy reports, and general discussions (magazines, webinars, etc.)?
• Are current attempts to set regulatory boundaries to human genome editing sufficient to protect vulnerable groups against possible damages resulting from the future application of CRISPR? Conversely, are vulnerable groups sufficiently shielded from opportunity costs resulting from the restriction/prohibition of genome editing?
• Do deliberative processes leading to international, national, and institutional policies regarding genome editing allow for the adequate representation of marginalized groups? What measures are necessary to build up trust between experts and representatives of marginalized groups?
• How can current deliberative processes realistically be improved to minimize the detrimental effects of commercial conflicts of interests, implicitly introduced political and social values, as well as various types of discriminatory attitudes towards historically marginalized groups (e.g., ableism, misogyny, racism, classism, and speciesism) in genome editing policymaking?
We encourage multiple article types, including Original Research, Systematic Review, Review, Policy and Practice Review, Hypothesis and Theory, Community Case Study, Data Report, General Commentary, and Opinion.
This Research Topic aims to address ongoing interdisciplinary debates in genome editing, bioethics, and policymaking, with a focus on the theoretical assumptions, discursive formats, and practical organization of deliberative processes in policymaking concerning human genome editing via CRISPR/Cas and comparable endonucleases.
In the context of interdisciplinary debates on the applications of CRISPR, three general questions emerge for biomedical policymaking:
1. How can we develop a morally justified, democratically legitimate, socially responsible, and economically viable global research policy on human genome interventions?
2. How can we implement policies on human genome interventions at international, national, and institutional levels?
3. How can we enforce these policies in particular research settings?
While these questions are often debated by renowned experts, those who might be affected by misregulation only play a marginal role in the deliberative processes behind research policies. This Research Topic aims to bring together voices from disability studies, feminism, critical race studies, critics of economic disparities, animal welfare and animal rights groups to explore the nature, viability, and practical details of inclusive policymaking for CRISPR-based human genome editing.
Topics of particular interest include, but are not limited to, the following:
• What is the current state of research regarding CRISPR-based human genome editing? What clinical research is especially relevant in the immediate future? What diseases affecting marginalized groups of patients have been neglected to far?
• Are there gaps in human genome research datasets that are important to genomic research? If so, what are the causes for this imbalance, and what might be the best response? Would calls for more raw data from non-Western individuals give rise to concerns about benefit sharing, privacy, trust, and so on?
• Who is interpreting the data, and whose perspectives are being considered in the background?
• What are the consequences of specific regulatory boundaries on genome editing for specific vulnerable groups?
• How prominent or (in)visible is research led by, or focusing on, marginalized groups in the current human genome editing literature, policy reports, and general discussions (magazines, webinars, etc.)?
• Are current attempts to set regulatory boundaries to human genome editing sufficient to protect vulnerable groups against possible damages resulting from the future application of CRISPR? Conversely, are vulnerable groups sufficiently shielded from opportunity costs resulting from the restriction/prohibition of genome editing?
• Do deliberative processes leading to international, national, and institutional policies regarding genome editing allow for the adequate representation of marginalized groups? What measures are necessary to build up trust between experts and representatives of marginalized groups?
• How can current deliberative processes realistically be improved to minimize the detrimental effects of commercial conflicts of interests, implicitly introduced political and social values, as well as various types of discriminatory attitudes towards historically marginalized groups (e.g., ableism, misogyny, racism, classism, and speciesism) in genome editing policymaking?
We encourage multiple article types, including Original Research, Systematic Review, Review, Policy and Practice Review, Hypothesis and Theory, Community Case Study, Data Report, General Commentary, and Opinion.
Keywords: biomedicine, agriculture, treatment, germline editing, marginalized groups, technology
Important Note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or journal at any stage of peer review.
