Clinical Trial Participant's Perspectives on Genetic Research Data Re-uses for Future Research

Abstract

Clinical trial participants play a crucial role in advancing medical research, and the data generated from their participation can indeed be invaluable for future studies. However, the reuse of genetic or clinical research data comes with ethical challenges that need careful consideration. Here are some of the key ethical issues associated with the re-use of such data: Reusing data without clear informed consent raises issues of autonomy and respect for individuals' choices. The main aim of this study is to assess the understanding of individuals involved in clinical trials regarding the sharing of genetic research information. Moreover, it seeks to explore the ethical issues and benefits linked with the use of genetic research data for future research initiatives. A cross-sectional observational study was applied to assess Knowledge Attitude Practices of clinical trial participants on reuse of genetic research data. The majority 70% of clinical trial participants were unsure about the difficulties that may arise in future regarding the re-use of genomic data, with concerns about confidentiality being the most common. The present study prioritized the involvement of clinical trial participants due to their critical role in both genetic and clinical research endeavors. There is a lack of awareness and understanding regarding the re-use of genetic sample data and ethical issues among the trial participants. Researchers must take measures to de-identify or anonymize data to protect participants. There is a clear need for comprehensive awareness programs and guidelines aimed at all clinical trial stakeholders. These initiatives would ensure that researchers, participants, and other involved parties are well-informed and adhere to ethical standards when utilizing genetic data for subsequent research endeavors.