NIH is committed to ensuring that study participants are equal partners in research and have input into how their data and biospecimens are collected and used in the future. At the heart of any research effort lies the need for transparent and clear conversations between researchers and prospective participants about mutual goals and expectations regarding sharing practices.
To assist in facilitating this dialogue, NIH has been working with stakeholders to identify informed consent language “best practices” capable of effectively describing how data and biospecimens will be stored and shared for future research. From these conversations, NIH has developed a new resource that we are seeking the community’s feedback on. The resource describes points to consider when addressing this issue, and provides sample consent language that researchers can tailor based on their own unique study needs.
Don’t worry – this is intended to be a helpful resource for the community and will be completely voluntary in nature – which is why we need to hear from you about its utility and usability. For example, are there gaps or additional components that would be helpful to include? What about barriers to the voluntary use of the sample language by the community? We look forward to hearing from all of our stakeholders – study participants, researchers, institutional authorities, and more – to help make this a valuable tool for enabling effective sharing to advance research.