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Informed Consent: Honesty and Understanding

Kelly Bryce
Portland State University

Abstract
This essay explores the key components of informed consent, including both doctor and patient
responsibilities. Different definitions are analyzed and then applied within an informed consent
scenario to establish the key components. These components are then related to The Immortal
Life of Henrietta Lacks, a novel detailing the case of a woman for whom consent was unclear.
Her radiation treatment was given without proper consent, but the research conducted on her
cervical tissues did not require consent. The end result shows that informed consent consists of
full disclosure of risks and benefits on behalf of the doctor, and complete understanding,
autonomy and coherence on behalf of the patient.

The concept of informed consent is often misconceived. Some may think that informed
consent involves only a page of fine print that a person will most likely not read, and a signature
at the bottom. However, to be informed is to understand, and it is the responsibility of both the
institute and the individual to solidify this understanding before consent can be given. This was a
major issue in The Immortal Life of Henrietta Lacks by Rebecca Skloot, a biography of a woman
whose tissue was taken without her knowledge.
According to the University of Washington School of Medicine, the definition of consent
is the process by which the treating health care provider discloses appropriate information to a
competent patient so that the patient may make a voluntary choice to accept or refuse treatment
(De Bord, 2014). This is an appropriate definition, however it is also obscure and can be
interpreted in different ways. There are additional factors involved regarding circumstance and
setting, such as the specific procedure. Conversely, the University of California School of
Medicine defines informed consent as mutual decision-making between the doctor and the
patient (Pantilat, 2008). This definition does not include the patients level of understanding nor
their autonomy. Although these definitions are vague, both statements are valid aspects to
informed consent. In summary, informed consent should be about the physicians disclosure and
benevolence, and about the patients complete understanding, coherence and autonomy.
A considerable component of informed consent is the institutes responsibility to their
patients or test subjects. One of the first cases involving informed consent was that of a patient
named Martin Salgo in 1957, whose doctor failed to inform him of the risks of his procedure and
Salgo woke up from anesthesia paralyzed from the waist down. The judge that presided over the
trial stated that a physician violates his duty to his patient and subjects himself to liability if he
withholds any facts which are necessary to form the basis of an intelligent consent by the patient

to the proposed treatment (Skloot, 2010, p. 132). Although this is an extreme case, this
occurrence emphasized the importance of informed consent. Additionally, Mark Alfano at the
Delft University of Technology explains that Three values governing doctorpatient interactions
are autonomy, beneficence, and nonmaleficence (2015, p. 3). This means that the patient has
complete control of their decisions, and that the physician has a responsibility to do no
intentional harm. Because of this, it is unethical and unfair to conceal any information that may
affect a persons decision of consent.
Additionally, regarding test subjects, the mechanism of informed consent should be
accustomed to the specific group of people. As Ariana Mangual Figueroa states, The
interactional nature of the consent process necessarily means that researchers should attend to the
unique social norms of the populations that they are studying and adapt the consent process
according to what is most appropriate within that research site (2015, p. 70). This shows that
informed consent is not a designated process; it should be refined to suit those involved. By
tailoring the consent process to a persons needs or wants, the more interactive and acceptable
the process is. This can be seen in The Immortal Life of Henrietta Lacks, when Henrietta signs
the consent form. With her background of farming and not many medical issues, Henrietta was
not familiar with cancer, radiation treatment, or any other aspects of her illness. Henriettas
cousin, Cootie, describes that she didnt seem to understand what was going on. She didnt want
to think she was gonna die (Skloot, 2010, p. 104). Henriettas consent form was designed under
the impression that the patient had an understanding of both the illness and the treatment. But in
Henriettas case, because of her background and lack of education, she was uninformed and
therefore should not have been able to consent to treatment without going through the process of
understanding her condition.

The radiation treatment Henrietta was given was unacceptable, because she did not have
a full understanding of the treatment before she signed the consent form. On Henriettas medical
record, the doctors wrote, Told she could not have any more children. Says if she had been told
so before, she would not have gone through with the treatment (Skloot, 2010, p. 69). This
means that had the doctors explained the risks of treatment to Henrietta, it may have altered her
decision to consent. Although the radiation treatment violated the concept of informed consent,
using her cervical tissue for research should not involve consent. In the case of Moore v. Regents
of the University of California, the Supreme Court ruled that When tissues are removed from
your body, with or without your consent, any claim you might have had to owning them
vanishes (Skloot, 2010, p. 232). Therefore, any claim Henrietta or her family thought they
should have to her cervical tissue is invalid. This is because tissues left in a doctors office or lab
is considered abandoned as waste, and therefore are available to researchers to use as they
please. As a result, Henriettas radiation treatment without her consent was unethical and
immoral, however her consent was not required for her cervical tissue to be taken and used for
medical research.
In conclusion, the patients level of understanding, autonomy, and coherence should all
be taken into account when consenting to a study or to treatment. Additionally, the doctor or
institute should always provide full disclosure of risks and benefits of the treatment or study. In
Henriettas case, although she was given a form to sign, her comprehension of her condition and
of the treatment did not satisfy the stipulations of informed consent. This shows how important
communication, understanding, and disclosure is to the informed consent process.

References
Alfano, M. (2015). Placebo Effects and Informed Consent. The American Journal of Bioethics,
15(10), 3-12. doi:10.1080/15265161.2015.1074302
De Bord, J. (2014). Informed Consent. Ethics in Medicine: University of Washington School of
Medicine. Retrieved from
https://depts.washington.edu/bioethx/topics/consent.html
Figueroa, A. M. (2015). Citizenship, beneficence, and informed consent: the ethics of working in
mixed-status families. International Journal of Qualitative Studies in Education, 29(1),
66-85. doi:10.1080/09518398.2014.974722
Pantilat, S. (2008). Informed Consent. Ethics at UCSF: Office of Educational Technology.
Retrieved from
http://missinglink.ucsf.edu/lm/ethics/Content%20Pages/fast_fact_informed_consent.htm
Skloot, R. (2010). The Immortal Life of Henrietta Lacks. New York: Broadway Books.