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Hello listeners, we are sorry to say we have to pause temporarily. We hope we will be bringing you more content soon. In the meantime please see our resources on https://www.itcrtraining.org/

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In this episode of Cracking the Cancer Code, we discuss critical role of ethics in cancer research data management. Dr. Jody Platt discusses with us how researchers navigate patient consent, data sharing, and privacy protection in an era of rapidly evolving technology. The episode highlights the importance of transparent communication, cultural competency, and the emerging concept of data sovereignty in building ethical research practices.

Note: There are laws to prevent discrimination based on genetic risk by employers and insurance companies, however advances in technology have created emerging potential concerns. See this article https://www.annualreviews.org/content/journals/10.1146/annurev-genom-111119-011436 for more information on the nuances involved.

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This episode takes a powerful and human-centered look at the stories behind cancer data. While researchers often work with spreadsheets full of numbers and categories, each data point represents a real person with a complex, emotional journey.

The episode features intimate conversations with three cancer survivors:

• Johanna Kenney, who was diagnosed with breast cancer at an unusually young age
• Christina Sisti, whose cancer journey intertwined with her husband's own battle against head and neck cancer
• Grace Waller, who fought osteosarcoma as a teenager and participated in a clinical trial that later became standard treatment

Through their stories, listeners learn how cancer statistics and medical records often fail to capture the full depth of the patient experience - from the shock of diagnosis, through the challenges of treatment, to the ongoing reality of life after being declared cancer-free. The episode also explores the vital role of patient advocates in helping bridge the gap between researchers and the people they're ultimately trying to help.

It's a moving reminder that behind every clinical trial, every survival rate, and every data point is a human being with hopes, fears, and a story that deserves to be heard.