Examining the Knowledge, Attitudes, and Beliefs of Sickle Cell Disease Patients, Parents of Patients With Sickle Cell Disease, and Providers Towards the Integration of CRISPR in Clinical Care

The CRISPR/Cas9 gene-editing technique is taking the scientific research and healthcare community by storm with the promise it holds to cure and ease the burden of debilitating diseases. However, there is limited knowledge regarding the implications of using this type of tool in human research and medicine. Researchers need to understand the viewpoints of patients, their families, and their providers, to ensure that the approach taken towards gene-editing is inclusive and respectful of different interests and concerns. The dialogue, thus far, has been dominated by scientific researchers, physician scientists, ethicists, public health and policy experts. It is important to the advancement of the science to study the patient s perspective about the use of the technology. In addition, parents often play important roles in the decision-making process; in this regard, understanding the views and questions of this group of individuals regarding CRISPR/Cas9 human use is essential. We conduct a qualitative study with a mixed methods component to investigate the knowledge, attitudes and beliefs of patients living with sickle cell disease (SCD), the parents of patients with SCD, and the physicians of this patient population regarding the use of CRISPR/Cas9 technology. The study is designed to measure these three cohorts baseline overall genetic literacy, CRISPR-specific literacy, and general attitudes and beliefs toward gene-editing/CRISPR Cas9(in both somatic and germline cells); to evaluate the utility of an educational tool in improving one s understanding of this innovative technique; and to gauge how attitudes and beliefs toward gene-editing, specifically CRISPR Cas9, perhaps shift or remain intact after the educational video, as well as within a focus group space.