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Introduction to Primer

In 1951, cervical cancer cells from Henrietta Lacks, an African-American woman being treated in the “colored” ward of Johns Hopkins Hospital in Baltimore, were the first grown outside the human body in a Petri dish. This is the most widely used cell culture in biomedical research yet, for decades, her family was marginalized by the very health care system that her cells support. Now, many years later, the biomedical research community is revisiting the story of Henrietta Lacks, the establishment of the HeLa cell line, and the role of community in biomedical research studies. What lessons can be learned from this case? Can we challenge the normative assumptions surrounding biomedical research to support more just and informed participation in shaping healthcare practices and policies? What roles can individuals and communities play in directing research that serves their needs?

Note

  • Note that the yellow highlighted areas refer to media or the accompanying HeLa Primer PPT.
  • Note that the pink hightlights refer to the infographics available on the SCAC website
  • Bracketed references in italics throughout the text refer to the HeLa Primer Powerpoint, and are linked to the SCAC website where that Powerpoint can be downloaded.

This primer addresses these questions through an historical overview of biomedical research and an exploration of contemporary practices and policies surrounding research with human subjects to advance basic scientific knowledge and biomedicine.

Section 1 reviews the emergence of biomedical research highlighting both the excitement and caution that accompanied this burgeoning field. This section uses two historically important proposals, Science: The Endless Frontier, which advocated for government investment in basic science, and the World Health Organization’s proposed definition of health. Both of these proclamations, made in 1945 and 1946 respectively, were perceived to promote social well-being in a post-WWII era. This section also introduces the biomedical and social models of health and reviews approaches that seek to create inclusive environments that account for variance in physical and cognitive abilities within the human population. A social justice framework is used to analyze health equity through three specific approaches: distributive justice, which seeks to provide universal access to the knowledge and goods produced through research; procedural justice which involves the actions of multiple stakeholders in health policy decision making; and responsive justice which requires research and policy to be informed by community input. A review of books and resources that further this dialogue is also included.

Section 2 reviews the history of biology as it relates to our understanding of cell structures and organization into tissues and organs, with special attention to bioecological niches.

Section 3 presents the basic principles and concepts of cell biology such as cell division, cancer, and the role that “immortality” plays in the establishment of the first human cell lines. This section also emphasizes the need for cell lines as biological tools of study and highlights the unique features they bring to research. This biological address is necessary in trying to unpack the ethical issues associated with human subjects research.

Section 4 reviews the historical trajectory of the first two human cell lines, HeLa and WI-38, and explores issues of commercialization, dissemination, and commodification. Section IV also touches on the social implications of separating cells from the body, and the ways in which such disassociation raises questions concerning ownership, privacy, and commodification.

Section 5 reviews the techniques and practices associated with cell culture, cell banking, and cell identification. This section also uses an intersectional analysis to highlight the interplay of biology, race, class, and gender in shaping the meaning of “cell line contamination,” both within, and outside, the scientific community.

In Section 6, the relationship between human papilloma virus (HPV) and cancer is clarified, with specific attention to the role of telomerase and genomic instability in the establishment of the HeLa cell line, the emergence of new diagnostic tools for HPV infection and cancer, and our increased understanding of stem cell niches.

In Section 7, practices regarding the participation of human subjects in research is reviewed, including an historical overview of informed consent and various policies regarding risk and harm to subjects.

Section 8 reviews the changing landscape of human subjects research, paying close attention to the evolution of laws and guidelines to recast privacy and ownership of human tissues, cells, and DNA within the context of emerging biocapital.

Section 9 presents contemporary case analyses regarding ownership, recognition, and compensation in the context of bone marrow donation (Flynn v. Holder), egg procurement (New York and California policies)

Section 10 presents cases where altruistic donation of human tissue and DNA are being used in contexts without adequate informed consent and for profit including genomic banks (Havasupai v. Arizona State University), umbilical cord banks, and milk banks.

List of Videos and Media

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  2. Slide Show. Chaddha, R. July 7, 2007. A Tale of Two Mice. NOVA PBS Link
  3. Maclean’s. Mackenzee Wittke: The Girl Who Never Ages. Link
  4. Rosenbaum, J. Nov 4, 2013. The Long War on Cancer: From Nixon to Now. Retro Report.org (12:52min). Link
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  6. Goodwin, M. 2011.Whose Values and Principles in a New Biopolitics. Tarrytown Meetings. YouTube. (10:48 min) Link
  7. Slide Show (49 slides): McLaughlin, T. May 31, 2010. An Epitaph, At Last. SoVaNow.com. Link
  8. Sparkman, S. 2013. The HeLa Cell Genome Published, Causes Privacy Controversy. Newsy/Dailymotion. Link
  9. Picht, M. Aug 7, 2013. Henrietta Lacks’ Family Finally Gets Say in Genome Research. Newsy/Dailymotion. (2:47 min) Link
  10. Ted TALK: Burke Harris, N. Feb 17, 2015. How Childhood Trauma Affects Health Across a Lifetime. Link
  11. Yeampierre, E. Session 2: Building the Relationship: Citizen and Community Engagement. NIH Workshop to Explore the Ethical, Legal, and Social Implications (ELSI) of Citizen Science. (10:31min) Link
  12. Singh, V. Sept 24, 2012. Extracellular Matrix. New York Times Video Science. Link
  13. Johnson, G. 2011. Rapid Visual Inventory & Comparison of Complex 3D Structures. YouTube. Science. Link
  14. EuroStemCell. Cell Culture. (6 min) Link
  15. Bohan, M. 2005. Checkpoints and Cell Cycle Control. Harvard Molecular and Cell Biology-HHMI OutreachProgram. Link
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  18. Providing Researchers with WI-38 Cell Cultures. Web of Stories. Link
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  21. Animation: HPV OncoTect Animation.mp4. YouTube. Animation Link
  22. Thirteen/Education Broadcasting Corporation (Producer.) June 25, 2010. Religion & Ethics Weekly: Informed Consent and Medical Research. (7:22 min) Link
  23. Film: Curtis, A. 1997. Modern Times: The Way of All Flesh. Aired on BBC. Modern Times Series, Editor Stephen Lambert. (52 minutes). Link
  24. March 15, 2010. The Immortal Henrietta Lacks. CBSnews. Link
  25. Snyderman, N. March 15, 2013. A Mother’s Fight. Rock Center with Brian Williams. NBCnews. (Producers, Amy Schmitz and Stacey Naggier).(7:56min) Link
  26. NBC. March 15, 2013. Man Starts Organization to Compensate Bone Marrow Donors. Rock Center with Brian Williams. NBC.com. (1:39’) Link
  27. Slide Show: BET July is African-American Bone Marrow Awareness Month. Bet.com. Link
  28. Podcast: Rogers, A. June 2011 Podcast. Breast Milk. Storyboard. (19:41min) Link
  29. Givens, A. & Glorioso C. Noc 15, 2013. I-Team: Donated Breast Milk Is Often Sold for Profit. (4:09min) Link
  30. Podcast: Feb 16, 2016. Remembering Anarcha, Lucy, and Betsey: The Mothers of Modern Gynecology. HiddenBrain. NPR. (26 min) Link
  31. Film: HBO and Harpo Films. April 2017. The Immortal Life of Henrietta Lacks Trailer. Director, George Wolfe. Link
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