NEWS & EVENTS
A larger circle representing return of results through doctor/patient interaction surrounded by seven smaller circles expressing themes of science, research, community, DNA/genomics, social justice, and results

Return of Individual Research Results to Participants in Observational Cohort Studies

June 26 - 27 , 2024
Virtual

Description

This workshop will address the critical need for developing best practices in returning incidental genetic and genomic findings to research participants. Returning results involves complex ethical, legal, logistical, and economic considerations. This process requires understanding the diverse perspectives of stakeholders who seek to access their personal data and participate in shared decision-making. By convening experts in the field of Return of Results (RoR) and engaging research study participants, the workshop aims to foster collaborative discussions on the translation of precision medicine and the implementation of incidental genetic and genomic findings in research settings.

Key areas of focus will include the principles and guidance for RoR, the classification of individual genetic and genomic results, and the ethical and clinical considerations for returning results within culturally diverse communities. Additionally, the workshop will explore participants' perspectives, and examine methods, outcomes, and lessons learned from previous practices. It will conclude with discussions on emerging technologies and other types of results that can be returned to participants, thereby broadening the scope beyond genetics and genomics.

Registration is mandatory for participation so please register by June 21st. Registration link: https://nhlbiworkshopsupport.certain.com/profile/web/index.cfm?PKwebID=0x4314e6ba&varPage=location