Revisiting the “Legacy” of Henrietta Lacks and HeLa Cells: Ethics Considerations related to Tissue Ownership

1. Christy Simpson, PhD Department of Bioethics Revisiting the “Legacy” of Henrietta Lacks and HeLa Cells: Ethics Considerations related to Tissue Ownership

2. Overview • Story of Henrietta Lacks • Ethics aspects – different readings • Relevant considerations • Tissue ownership • Concept of self • Informed consent • Privacy and bodily integrity • Possible harms

3. Getting started...

4. Henrietta Lacks and HeLa cells • I951- Henrietta goes to Johns Hopkins for treatment of her aggressive adenocarcinoma of the cervix (dies later in 1951) • Tissue sample taken without consent – given to Dr. George Gey • First human cell line developed – HeLa • Used by researchers around the world • Genome sequenced in 2013

5. Context • “I’ve [Skloot] tried to imagine how she’d feel knowing that her cells went up in the first space missions...or that they helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization.” (p. 2)

6. Context • “If you pretty up how people spoke and change the things they said, that’s dishonest. It’s taking away their lives, their experiences, and their selves.”(p. ix) • Does the same hold true of our tissues?

7. Context “...She’s the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?” (Statement by Lawrence, one of Henrietta’s children, p. 168)

8. Consider... • Possible harms • Family struggles when they find out 20 years later that Henrietta’s cells were taken • “Done wrong”; possibility of redressing? • How to reconcile the fact that Henrietta is dead with the fact that her cells live on (and in huge numbers) • Cultural, spiritual, racial, and family context brought to the forefront

9. Consider...Informed consent • Significant changes since the 1950’s • Consent for excising/using tissue for diagnosis and research • Generally speaking, different approach to and understanding of what informed consent involves as well as distinct rules governing collection, retention and use of this tissue (Cheung, Martin & Asa 2013)

10. Consider... • The power of the story • What if we changed some of the details? • What about the persons whose tissue samples didn’t lead to cell lines? • How does this story influence our sense of self as per our tissues?

11. Consider... • What makes you you? • How much does the type, shape and nature of the body you have influence your sense of self? • Is your body your own? (Herring & Chau 2007)

12. Tissue ownership – what’s at stake • Implications of our descriptions/definitions • Informed consent • Sense of self generally • Continued research and scientific advances • Cooperation and collaboration • Future benefits sharing/commercial interests

13. Tissue ownership • Central question: Is there a relevant difference between tissue that’s connected to me...and tissue that’s been excised from me?

14. Tissue ownership(Tsosie 2007, Herring & Chau 2007) • Three different perspectives/framings • Property • Privacy/bodily integrity • Blend of both perspectives • Bodies and selves are interdependent

15. Tissue ownership – Property • “Own” our body – like other objects • Fosters sense of ability to manipulate, change • Privileges values of efficiency, social utility • Separation between self and body? • Could this mean that we should/could retain rights to our tissue after it is excised?

16. Tissue ownership – Property • American courts – generally speaking, lose any ownership and do not retain any property rights once tissue is excised (Cheung, Martin & Asa 2013) • However – challenge of potential for future benefits sharing?

17. Tissue ownership – Privacy/bodily integrity • Identify self with one’s body • Privileges values of dignity, autonomy, equality, privacy • Integrity of and control over my own body and privacy and confidentiality of my personal (identifiable) health information

18. Tissue ownership – Privacy/bodily integrity • Connects more readily with spiritual and cultural understandings of, e.g., the body as sacred • Consent tied to research, secondary use of identifiable tissues, etc.

19. Tissue ownership – Interdependent • Our bodies are leaky • “The more we know about the human genome, the more we realise how similar our bodies are.” • Mutability and changeable nature of the body

20. Tissue ownership – Interdependent • No one model can capture the nuances of bodily life • Mix of both property and privacy/integrity more useful • Need to develop models that also reflect the importance of community and relationships • Additional considerations – human microbiome research?

21. Tissue ownership – Interdependent • Research on the human microbiome(Hawkins & O’Doherty 2011) • Refers to the entire complement of microorganisms that exist in and on every human body • Part of or separate from the human body? • Much regarded as waste products • Yet we have co-evolved with these bacteria...personal “collection”, possibly identifiable?

22. Consider... “...It’s weird to say everybody gets money except the people providing the raw material,” she [Ellen Wright Clayton] says. “But the fundamental problem here isn’t the money, it’s the notion that the people these tissues come from don’t matter.” (Skloot 2006)

23. In closing... • Fundamental need for trust • Ability to get, retain and use tissues • Consent is a key mechanism in maintaining trust • How we understand consent and its purpose can both influence and be influenced by what we think about tissue, its connection to our “selves”, and possible harms • It is also about appropriate stewardship too

24. In closing... • Pathology departments as stewards of diagnostic tissue • “...must be responsible for striking the right balance between the duty to retain diagnostic tissue in accordance with statutory and regulatory requirements and the ever-increasing demand for what still represents the richest source of clinically annotated human tissue in this era of personalized medicine.” (Cheung, Martin & Asa 2013)

25. References • Skloot R. Taking the least of you. The New York Times, April 16, 2006. • Skloot R. The immortal life of Henrietta Lacks. US: Crown Publishers, 2010. • Skloot R. The immortal life of Henrietta Lacks, the Sequel. The New York Times, March 23, 2013.

26. References • Cheung CC, Martin BR, Asa SL. Defining diagnostic tissue in the era of personalized medicine. CMAJ 185(2): 135-139; 2013. • Hawkins AK, O’Doherty KC. “Who owns your poop?”: insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies. BMC Medical Genomics 4(72): 2011.

27. References • Herring J, Chau P-L. My body, your body, our bodies. Medical Law Review 15: 34-61; 2007. • Tsossie R. Cultural challenges to biotechnology: Native American genetic resources and the concept of cultural harm. Journal of Law, Medicine & Ethics. 396-411; 2007.