![]() ![]() How often are biospecimens obtained from one individual particularly valuable? Does this factor weigh into ethical policy creation?.What policies exist concerning the collection, storage, and research use of biospecimens and data?.What ethical oversight ( if any) is needed for an indefinite number of research projects on cells, and when is consent from an authorized third party necessary?.For example, IRB educators can use Lacks’ story to explore ethical topics like: Henrietta Lacks’ story (and many like hers) offer examples for IRB administrators to engage in ethical discussions, provoke questions, and describe the role of IRB in research and informed consent in research practices. The Lacks family largely distrusted Skloot, the media, and the scientific community because neither Henrietta nor any of her family members knew about nor authorized the tissue sample extraction, cultivation, and distribution. However, they did not have a clear understanding of what HeLa cells were, where they came from, or what it meant when doctors and scientists said that Henrietta’s cells were “immortal.” The Lacks family knew a little about Henrietta’s cells (called HeLa cells). Science writer Rebecca Skloot worked with the Lacks family in an effort to tell the story of Henrietta’s life and her contribution to science and medicine. Lacks’ cells proved to be robust and thrived in the lab, providing researchers with endless cancer cells for scientific experimentation over the ensuing decades. Some of her cancer tissue was removed and sent to George Gey’s lab at Johns Hopkins Hospital to be cultured, a feat that had been repeatedly attempted with no success. To briefly summarize the book, in 1951 thirty-year-old Henrietta Lacks was diagnosed with cervical cancer and treated with radium and x-ray therapy. While there are countless stories that emphasize the importance of ethical practices in research, the book The Immortal Life of Henrietta Lacks by Rebecca Skloot is one of the most accessible and profound. ![]() Presenters Michael Leary, MA, and Gianna McMillan, MA, conveyed the importance of stories and the use of narratives in IRB member education during their conference presentation. Origin stories can help solidify goals and establish priorities for administrators and researchers. The networking ribbons represented my professional origin story and captured my journey into the world of research compliance. I opted to organize my ribbons in the following order: Educator, Researcher, Ethicist, and IRB Manager. The networking ribbons offered an engaging way to initiate conversations with other attendees. At the 2018 Advancing Ethical Research Conference, attendees selected from networking ribbons displayed in the on-site check-in area that emphasized an array of professional roles and affiliations.
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