Chain Reactions: Assessing the Potential for Heritable DNA Modification to Create Generational Benefits for Communities Affected by Sickle Cell Disease

This research paper focuses on heritable gene editing, which is a technology that modifies the germline in order to produce heritable changes to an individual and their subsequent offspring. This paper aims to assess its ability to provide an equitable and accessible form of disease prevention for those with sickle cell disease (SCD). Because of the advancements made in gene editing with SCD, and the disproportionate effect it has on marginalized communities, SCD will be evaluated as a case study for how heritable gene editing can address health disparities in a way that is equitable, sustainable, and accessible. In investigating this topic, I interviewed a variety of experts and stakeholders in the field such as those involved in gene editing regulation, gene editing scientists, SCD researchers, and an individual that has undergone gene editing treatments for SCD. My goal was to gain insight on the feasibility of the technology to perform these goals on a scientific scale, upon a regulatory landscape, and from SCD stakeholder perspectives. My findings through this process detail the necessity for precise and deliberate language when developing regulation around heritable gene editing, as well as methods for stakeholder engagement, mitigating risks, and improving accessibility.