Wk 6, MHA 508: DR 2 APA format 175-265 words Cite at least 1 reference Further the conversation and expand on the below response:   Christie Artuso T

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Wk 6, MHA 508: DR 2 APA format

175-265 words

Cite at least 1 reference

Further the conversation and expand on the below response:

 

Christie Artuso

This book (see attachment) really does add perspective for anyone who is working in, or aspiring to work in the healthcare industry. It adds not only history – but perspective, as well as an appreciation for what we have learned over the years as we continue to strive for equity and fairness in the delivery of care.

4:45 PM 

Book reference: Lantos, J. D. (2016). Thirteen ways of looking at Henrietta Lacks. Perspectives in Biology and Medicine, 59(2), 228-233. ABSTRACT Wallace Stevens’s 1917 poem “Thirteen Ways of Looking at a Black-
bird” suggests that what we see is never simply what is there. This essay presents 13 ways
of looking at Henrietta Lacks (1920–1951), whose cultured cells were used to create
the HeLa cell line, and whose story was told in a 2011 book by Rebecca Skloot.

What are we to make of Henrietta Lacks? After dying at a young age more than half a century ago, she has now become immortal twice—once bio-
logically, and once culturally.

She was first immortalized when cells from her cervical biopsy were cultured
and became the first immortal cell line. The idea that this made Lacks herself im-
mortal illustrates the dangerous temptations of genetic reductionism and literary
license. Such literary license is illustrated by the title of Rebecca Skloot’s remark-
able 2011 bestselling book about Lacks and her cells. Skloot wrote a treatise that
is at once a detective novel, an analysis of the conundrums of research ethics, a
call for health system reform, and an exploration of racism in America. It spoke
to the anxieties that surround biotechnology in an era of commercial exuberance

Children’s Mercy Hospital, University of Missouri–Kansas City.
Correspondence: John D. Lantos, Children’s Mercy Bioethics Center, 2401 Gillham Road, Kansas

City, MO 64108.
E-mail: jlantos@cmh.edu

Perspectives in Biology and Medicine, volume 59, number 2 (spring 2016): 228–233.
© 2017 by Johns Hopkins University Press

228

Thirteen Ways of Looking at
Henrietta Lacks

John D. Lantos

Thirteen Ways of Looking at Henrietta Lacks

229spring 2016 • volume 59, number 2

and inequality. The book was hailed by critics and has been assigned reading for
incoming students on dozens of college campuses. It has been translated into over
30 languages. Oprah is making it into a movie.

Many lessons can be drawn from the story. The most common and catchy one
in that Lacks was shamelessly exploited by both scientists and biotech companies.
They profited from the cells that they took from her without her consent and
returned none of the profits to her family. That story leads to calls for reform of
both our health-care delivery system and our system of research oversight (Kurtz
2013; Skloot 2015). But different stories can be told about what could have or
should have been done differently for Lacks and her family. The facts don’t nec-
essarily speak for themselves.

In 1917, Wallace Stevens wrote the poem “Thirteen Ways of Looking at a
Blackbird” to suggest that what we see is never simply what is there. As critic Hel-
en Vendler (1969) observes with regard to Stevens’s poetry, seeing always requires
imagination (77). One can imagine 13 ways of looking at Henrietta Lacks.

1–3. I was of Three Minds

I was mesmerized. The writer hated high-school science but was fascinated by
HeLa cells. She set out on a quest. She came across an old photograph of Mrs.
Lacks. She imagined what it might have been like for Lacks to be told that she
would soon be dead, that her five children would soon be motherless. She tracked
down Mrs. Lacks’s children, earned their trust, and told their stories. The human
tale parallels the story of scientific discoveries. Both stories are enriched by the
style of telling.

On a second reading, concerns arise. Skloot’s brilliant journey of discovery
starts to seem as exploitative as the discoveries of the scientists 50 years earlier. She
turns Henrietta’s life and the lives of her descendants into what Karla Holloway
(2012) calls “an open narrative for public consumption.” To what purpose are we
readers given the details of her daughter’s abusive marriage and divorce, the im-
prisonment of one of her children, the details of the crimes he was jailed for, and
the amount of her Social Security check? Do we really need to know the lurid
details of her sexually transmitted diseases?

Every idealistic project is imbued with moral ambiguity. Every discoverer trans-
gresses. Judgments about the possible risks and rewards of each transgression must
be made prospectively. They are all always open to retrospective challenges. We
protect privacy in medical settings today far better than we do in journalistic ones.

4. An Indecipherable Cause

In the research that was done on the cells from Mrs. Lacks’s tumor, there were
two central transgressions. One was a failure to get informed consent from Lacks

John D. Lantos

230 Perspectives in Biology and Medicine

to use those cells in the laboratory. The other was a failure to de-identify the cell
line. The first was a violation of autonomy, the second a violation of privacy. The
first was consistent with the standards of the time. The second is more interesting.
If the researchers had de-identified the biospecimens, and called them “X-cells”
instead of “HeLa cells,” would they then have breached privacy? Are we harmed
by the use of de-identified tissue samples? That debate is at the center of cur-
rent controversies about research ethics. At least some researchers think that more
stringent consent requirements would create enormous burdens, minimal bene-
fits, and would inhibit important research (see Botkin et al. 2014).

5. Part of the Pantomime

Informed consent is a noble ideal but a problematic practice (O’Neill 2003). It has
become an elaborate ritual in which “physicians and scientists act defensively and
patients lack control over the content and flow of information” (Siegal, Bonnie,
and Applebaum 2012, 359).

Nobody can explain what cannot be foreseen. No one would have dared to
dream all the ways in which Mrs. Lacks’s cells would be useful.

Imagine that Lacks had been asked for permission to use her cells in research
that might lead to a vaccine against polio. She certainly would have consented.
After all, as she lay dying, her doctor told her about her miraculous cells. Henri-
etta smiled and said that she was glad that her pain would come to some good
for someone.

Seeking new cures from biospecimens that would otherwise have been incin-
erated is also a way of showing respect for persons. We are, in the end, for better
or worse, all in this together.

6. The Only Thing Moving

Can we judge the past by standards of the present? Such judgments imply that we
are now better. But perhaps we just have new forms of blindness.

Today, we have new regulations to protect patients’ privacy. But in every other
domain of life, we have far less privacy than ever before. We live in a world where
“each person’s every living day [is] recorded in complete detail and reproducible
with a few deft keystrokes” (Powers 1998).

Privacy is not always either desirable or safe. Sometimes, privacy leads isolation
and vulnerability. Hospital patients may be at risk of harm if family members
cannot get information about them (Slishman 2015). Hospitals may not be able
to both protect privacy and also measure and improve the quality of care (Kaiser
2006). Total safety can be more dangerous than flawed risk assessments. We may
all end up dying alone in a terrible privacy that prevents discoveries that could
keep us alive.

Thirteen Ways of Looking at Henrietta Lacks

231spring 2016 • volume 59, number 2

7. The River Is Moving

It is not so clear that we now do things better. Consider two citizens of Balti-
more, separated by two generations: Henrietta Lacks and Freddie Gray. Who was
harmed more and in more unjust ways?

8. The Beauty of Innuendos

Another central trope in the book is that Henrietta Lacks was treated badly be-
cause she was black. But she was treated the way other patients, white and black,
were treated at leading medical centers in the 1950s. During that era, researchers
routinely did unacceptable things to patients without their consent. For research,
patients were denied effective treatments, given toxic drugs, subjected to unnec-
essary surgery, and exposed to radiation. Babies had urinary catheters placed and
x-rays taken for no benefit and without parental consent. Some patients died as
a result of these studies (Beecher 1966). Such research exploited vulnerable and
non-vulnerable patients alike. The clinic at Johns Hopkins where Mrs. Lacks was
treated took biopsies from all its patients, white and black alike (Jones 1997).

9. Cry Out Sharply

The prophetic voice still calls for justice. No one should be exploited for the ben-
efit of others. It is a travesty that the Lacks family doesn’t have health insurance.
But if researchers had never taken Henrietta’s cells, her children would still lack
health insurance. If her cells had not led to valuable scientific discoveries, they
would be even worse off than they are now. They would have neither health in-
surance nor the polio vaccine.

10. Do You Imagine Golden Birds?

Reviews of Skloot’s book generally endorse a flawed syllogism: (1) Henrietta
Lacks’s cells led to enormous scientific benefit; (2) her children had no health
insurance; thus, (3) an injustice was done. The leap from exploitation of Lacks to
injustice for her children is philosophical sleight of hand. Her children did benefit,
just like the rest of us, from the treatments discovered by research that was made
possible by HeLa cells. They just did not benefit any more than the rest of us.

According to the central syllogism of Skloot’s book, the lack of compensation
to the Lacks family is evidence of injustice. But if the Lacks family should have
been rewarded for Henrietta’s contributions to medical science, then everybody
who participates in any study that leads to profits for anyone should get a share of
those profits. Or if that is not a proper implication, then where and how should
we draw lines to demarcate the boundaries of compensable injustice?

John D. Lantos

232 Perspectives in Biology and Medicine

Most importantly, consent is about autonomy, not justice. If Lacks’s consent was
not properly procured, then neither her children nor anyone else should profit
from her cells.

11. Lucid, Inescapable Rhythms

Which research participants should be compensated and how much should they
receive? Should the Lacks family be singled out for compensation because Henri-
etta’s cells happened to become extraordinarily useful? What of those who par-
ticipated in research that didn’t pan out? Should compensation be offered on the
basis of the luck of the draw to those who, through no effort of their own, have
genetically advantageous tissues? Should compensation be offered only to those
whose researchers understood how to monetize their discoveries? By this ap-
proach, compensation would reflect luck, not justice. Faden (2011) suggests that
we should all freely donate our tissues to research in the hope that, as with HeLa
cells, the resulting discoveries will benefit us all.

12. A Fear Pierced Him

We all benefit from research that leads to new discoveries and better treatments.
We all want our privacy preserved. But what if we cannot have both? How many
new discoveries are we willing to give up in order to preserve each small sliver of
our rapidly disappearing privacy?

13. It Was Evening All Afternoon

Skloot tells a tale that is both light and dark, both ennobling and disturbing.
Nothing is quite what it seems. Nobody in the tale is simply good or simply evil.
There are no heroes or villains. Such a tale ought to make us more compassionate
and increase our yearning for a more just world. But it does not make the case
that we need to change the way biomedical research is regulated. Henrietta Lacks
should be immortalized for an act of generosity. If asked, she might have made that
act voluntarily. Would it be terrible to assume that she would have, celebrate her
for that, and be inspired to be equally generous with our own cells?

References

Beecher, H. K. 1966. “Ethics and Clinical Research.” N Engl J Med 274: 1354–60.
Botkin, J., et al. 2014. “Proposed Regulations for Research with Biospecimens: Responses

from Stakeholders at CTSA Consortium Institutions.” Am J Med Genet A 164A (4):
892–97.

Faden, R. 2011. “The ‘Biography’ in Bioethics.” YouTube video, 01:13:13, from TCU
Fogelson Honors Forum. Posted by “TCU,” Oct. 11. https://www.youtube.com/
watch?v=tJjCARcZVoQ.

Thirteen Ways of Looking at Henrietta Lacks

233spring 2016 • volume 59, number 2

Holloway, K. 2012. “Henrietta Lacks and the Ethics of Privacy.” YouTube video, 49:35,
presented at Duke University on Sept. 25. Posted by Georgia Tech Cable Network,
Oct. 8. https://www.youtube.com/watch?v=CZf_49VZ9Pg.

Jones, H. W. 1997. “Record of the First Physician to See Henrietta Lacks at the Johns Hop-
kins Hospital: History of the Beginning of the HeLa Cell Line.” Am J Obstet Gynecol
176: s227–s228.

Kaiser, J. 2006. “Rule to Protect Records May Doom Long-Term Heart Study.” Science
311: 1547–48.

Kurtz, S. 2013. “Obama’s Secret Weapon: Henrietta Lacks.” National Rev, Aug. 19. http://
www.nationalreview.com/corner/356139/obamas-secret-weapon-henrietta-lacks-
stanley-kurtz.

ONeill, O. 2003. “Some Limits of Informed Consent.” J Med Ethics 29 (1): 4–7
Powers, R. 1998. “Losing Our Souls, Bit By Bit.” NY Times, July 15.
Siegal, G., R. J. Bonnie, and P. S. Applebaum. 2012. “Personalized Disclosure by Informa-

tion-on-Demand: Attending to Patients’ Needs in the Informed Consent Process.” J
Law Med Ethics 40 (2): 359–67.

Skloot, R. 2011. The Immortal Life of Henrietta Lacks. Farmington Hills, MI: Gale Group.
Skloot, R. 2015. “Your Cells. Their Research. Your Permission?” NY Times, Dec. 30.

http://www.nytimes.com/2015/12/30/opinion/your-cells-their-research-your-per-
mission.html?_r=0.

Slishman, S. 2015. “I Wish HIPAA Had Privacy Settings.” KevinMD.com, Sept. 11. http://
www.kevinmd.com/blog/2015/09/i-wish-hipaa-had-privacy-settings.html.

Stevens, W. 1917. “Thirteen Ways of Looking at a Blackbird.” In The Collected Poems of
Wallace Stevens. New York: Knopf, 1954.

Vendler, H. H. 1969. “The Sausage Maker.” In On Extended Wings: Wallace Stevens’ Longer
Poems. Cambridge: Harvard University Press.

Reproduced with permission of the copyright owner. Further reproduction prohibited without
permission.

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