Revisiting the “Legacy” of Henrietta

Lacks and HeLa Cells:

Ethics Considerations related to
Tissue Ownership
Dr. Roz Iasillo
Trinity High School
River Forest, IL
Overview
Story of Henrietta Lacks
Ethics aspects – different readings

Relevant considerations
Tissue ownership
- Concept of self
- Informed consent
- Privacy and bodily integrity
- Possible harms
Getting started...
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
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 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)
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 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

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/framings
Property

Privacy/bodily integrity

Blend of both perspectives

- Bodies and selves are interdependent
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?
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 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
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
useful
Need 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
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?
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 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

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.