- Course overview
- Search within this course
- Introduction
- The historical and societal context
- The journey through consent and data management
- What happens at the end of the process?
- Your feedback
- References and further learning
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What happens at the end of the process?
In the final section, we finish the journey through the research pipeline, looking at what happens to an individual’s data at the end of the process. We take a last look at our case studies, and explore the impact of privacy issues, as well as getting back in touch with research participants to obtain consent for a new purpose, or to share results or findings.
We also consider the role of biobanks, the impact of the patient advocacy movement, and what is next for the role of the research participant and anyone working with human data.
During this video we focus on:
- getting back in touch with participants to re-consent or communicate results
- biobanks in focus
- the role of patient advocacy
Video length: 18 minutes.
Continue through the final pages of this tutorial to provide your feedback and review the references and suggested further learning.