Revisiting the “Legacy” of Henrietta Lacks and HeLa Cells:

Ethics Considerations related to Tissue Ownership

Christy Simpson, PhDDepartment of Bioethics

Overview

Story of Henrietta LacksEthics aspects – different readings

Relevant considerationsTissue ownership- Concept of self- Informed consent- Privacy and bodily integrity- Possible harms

Getting started...

Henrietta Lacks and HeLa cellsI951- 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 GeyFirst human cell line developed – HeLaUsed by researchers around the worldGenome sequenced in 2013

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)

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?

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)

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

Consider...Informed consentSignificant 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)

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?

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)

Tissue ownership – what’s at stakeImplications of our descriptions/definitions

Informed consentSense of self generally

Continued research and scientific advancesCooperation and collaboration

Future benefits sharing/commercial interests

Tissue ownership

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

Tissue ownership (Tsosie 2007, Herring & Chau 2007)

Three different perspectives/framingsProperty

Privacy/bodily integrity

Blend of both perspectives- Bodies and selves are interdependent

Tissue ownership – Property

“Own” our body – like other objectsFosters sense of ability to manipulate, changePrivileges values of efficiency, social utilitySeparation between self and body?

Could this mean that we should/could retain rights to our tissue after it is excised?

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?

Tissue ownership – Privacy/bodily integrity

Identify self with one’s bodyPrivileges values of dignity, autonomy, equality, privacy- Integrity of and control over my own body and privacy

and confidentiality of my personal (identifiable) health information

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.

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

Tissue ownership – Interdependent

No one model can capture the nuances of bodily life

Mix of both property and privacy/integrity more usefulNeed to develop models that also reflect the importance of community and relationships

Additional considerations – human microbiome research?

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 bodyPart of or separate from the human body?- Much regarded as waste products- Yet we have co-evolved with these bacteria...personal

“collection”, possibly identifiable?

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)

In closing...

Fundamental need for trustAbility to get, retain and use tissuesConsent is a key mechanism in maintaining trustHow 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

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)

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.

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.

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.