The Immortal Life of Henrietta Lacks

1. The Immortal Life of Henrietta Lacks RebeccaSkloot Kaitlyn Burke, CydneyChomel, Hannah Crist, Brooke Delay, Lindsey Gamrat, Leslee Johnson, Shannon King, Amanda Lengerich, KayeleneLinkenheld, and Nora Melvin Presented by:

2. Who is Rebecca Skloot? • First learned about HeLa cells and Henrietta Lacks in a community college biology class • “One of the most important things that happened to medicine in the past one hundred years.” • Said by Rebecca’s biology professor about HeLa cells • Graduated with biology degree • Used HeLa cells in the lab but Henrietta was never mentioned again • Journey to uncover Henrietta’s story (Skloot, 2011)

3. 1947 • Nuremberg code • Set up ethical standards for human experimentation as a result of horrific experiments performed by Nazi doctors during WWII (Skloot, 2011)

4. January 29, 1951 • Henrietta Lack’s first doctor’s appointment at Johns Hopkins Hospital (Skloot, 2011)

5. February 5, 1951 • Henrietta was informed that her cervical biopsy results indicated a malignant tumor (Skloot, 2011)

6. February 6, 1951 • Henrietta returned to her doctor for first radiation treatment • First “stolen” cells (Skloot, 2011)

7. April 10, 1951 • George Gey appeared on TV discussing his work on HeLa • Successfully cultured first immortal human cell (Skloot, 2011)

8. 1957 • “Informed Consent” appeared on court documents (Skloot, 2011)

9. 1973 • Lacks family learns that Henrietta’s cells are still alive • Blood samples taken from Lacks family • Failed communication between John Hopkins’ researcher, Susan Hsu, and family • Family thought they were getting tested for cancer but test was actually to see if researchers could culture their cells to grow immortally (Skloot, 2011)

10. 1974 • Federal policy for protection of human subjects requires informed consent • Fourdays prior to policy going into effect, Henrietta’s daughter, Deborah, had more blood drawn • Deborah thought she was getting tested for cancer • The physician was a geneticist, not an oncologist, and really took her cells for genetic research (Skloot, 2011)

11. 1985 • Portions of Henrietta’s records werepublished without her family’s consent (Skloot, 2011)

12. 1988 • John Moore v. California • Court rules in Moore’s favor saying that patients have the power to control what becomes of their tissues (Skloot, 2011)

13. 1991 • Supreme Court of California rules against John Moore saying that after one’s tissues are removed from their body, regardless of consent, the individual no longer owns those tissues (Skloot, 2011)

14. Informed Consent • An individual’s autonomous authorization of a medical intervention or of participation in research. He or she must authorize something through an act of informed and voluntary consent • The elements of informed consent • Competence • Disclosure • Understanding • Voluntariness • Consent (Beauchamp & Childress, 2001)

15. Henrietta’s Informed Consent for Radiation Treatment “I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: _____________.” (Skloot, 2011)

16. Informed Consent • Family blood draws • -Doctors requested to test family for HLA antigen • -Family interpreted this as testing for cancer and were never corrected of their misunderstanding • -Family continued to wait for a phone call with cancer results (Skloot, 2011)

17. Paternalism • “The intentional overriding of one person’s known preferences or actions by another person, where the person who overrides justifies the action by the goal of benefiting or avoiding harm to the person whose preferences or actions are overridden” (Beauchamp & Childress, 2001)

18. Vulnerable Populations • Economically disadvantaged • Racial and ethical minorities • Uninsured • Low income children • Elderly • Homeless • HIV • Chronic health conditions including mental illness (AJMC, 2006)

19. Paternalism/Vulnerable Populations • Prisoners are a vulnerable population • Cancer cell injection • Giving back to society • Unable to give informed consent • Johns Hopkins segregated hospital • Different treatment/care • Physicians took advantage of patients for research in exchange for free care (Skloot, 2011)

20. African American Superstitions Superstitions about healthcare date back to at least the1800’s • Barrier for black patients to seek care • “Night Doctors” • Medical Schools offering money for black bodies that can be worked on (Skloot, 2011)

21. Libertarianism vs. Utilitarianism • Libertarianism • Henrietta’s individual freedom and rights are more important than the greater good that came from her cells • Utilitarianism • Henrietta’s cells were taken without her knowledge, violating her rights, but produced advances in medicine such as the polio vaccine, cloning, gene mapping, in vitro fertilization. (Brainard, 2013; Skloot, 2013)

22. References Beauchamp, T., & Childress, J. (2001). Principles of biomedical ethichs. (5 ed., pp. 78-79). New York, New York: Oxford University Press. Brainard, C. (2013). HeLa-cious coverage: Media overlook ethical angles of Henrietta Lacks story. ColumbiaJournalism Review. Retrieved fromhttp://www.cjr.org/the_observatory/henrietta_lacks_hela_genome_pr.php?page=all Skloot, R. (2011). The Immortal Life of Henrietta Lacks. New York: Broadway Books. Skloot, R. (2013). The immortal life of Henrietta Lacks, the sequel. The New York Times. Retrieved fromhttp://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.tml?pagewanted=all&_r=0 Vulnerable Populations: Who Are They? (2006, November 1). AJMC. Retrieved November 17, 2013, from http://www.ajmc.com/publications/supplement/2006/2006-11-vol12-n13suppl/nov06-2390ps348-s352/1