Consent has long been a controversial and complex debate for pharma. While the industry has actively placed great emphasis on efforts to promote the patient voice as the heart of development efforts in recent years, the role and rights of patients in medical research have not always been so clear-cut.
Perhaps the most famous example of patient consent in healthcare is the extraordinary life of Henrietta Lacks and her family’s fight to reclaim her legacy. Following the historic settlement won by the Lacks estate earlier this year, we explore how one ordinary woman’s cells changed the course of medical research, and the implications for patient rights and the commercialisation of life-saving innovations.
Beyond the HeLa controversy, we venture into the modern age of patient partnerships, as Pfizer moves toward sharing clinical trial participants’ own data with them. Plus we learn how Lumanity combines patient and provider engagement strategies to optimise business and health outcomes, and examine the evolution of active patient inclusion in trials with the National Institute for Health Research.
As we immerse ourselves in these stories, debates, and partnerships, we invite you to join the conversation. Your thoughts, reflections, and perspectives are invaluable in shaping the ongoing dialogue about the intersection of healthcare, ethics, innovation, and the evolving landscape of patient engagement.
Wishing you enlightening reading.
Eloise McLennan – editor, Deep Dive
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