Critical Analysis of a Literary Work and Personal Position

The importance of medical research can never be understated as far as
safeguarding the health and wealth of the human race is concerned. This
is especially considering that health has a bearing on the wealth
creation capacity of individuals. Needless to say, there has been a
proliferation of ailments, some of which have proved extremely difficult
to treat. This has triggered a flurry of studies and medical research
and experiments, all in an effort to come up with a comprehensive
understanding of the varied aspects of the ailments including the
symptoms, causes, risk factors, and especially the most appropriate and
effective treatments and prevention measures for the ailments. Needless
to say, the medical research has largely involved the use of animals
before the medications or interventions can be tested on human beings.
This, however, does not negate the fact that human subjects have also
been increasingly used in such research studies.
Nevertheless, the use of human subjects introduces a number of ethical
issues. This is especially with regard to informed consent,
confidentiality of the particulars of the subjects and especially with
regard to the outcomes of the research. Informed consent refers to the
process by which a patient that is fully informed would take part in the
varied choices pertaining to his or her healthcare. It is based on the
ethical and legal right pertaining to the fact that patient has to
direct the things that happen to his or her body, as well as the ethical
duty that the physician has to allow for the involvement of the patient
in his or her healthcare. Informed concept is, essentially, a crucial
component of the research process, in which case it entails going beyond
obtaining the patient’s signature on a form. It is always imperative
that the investigators, researchers and physicians educate the potential
subjects on all aspects pertaining to the research so as to ensure that
they come up with a truly informed decision pertaining to whether they
would like to take part in the research or not. It is imperative that
their informed consent is given voluntarily without coercion and has to
be based on a clear comprehension of all aspects pertaining to the
participation, as well as the manner in which the results pertaining to
the experiments in which they participate will be used.
Patient privacy, on the other hand, revolves around the capacity of a
patient or subject having control pertaining to the extent,
circumstances and timing of sharing himself or herself intellectually,
physically, and behaviorally with other people (Plomer, 2005). It
underlines the right of an individual to restrict access by other people
to certain aspects or elements of their person that may include
identifying information, thoughts, as well as information that is
incorporated in their bodily fluids and tissues. This has a close
relationship to confidentiality, which revolves around the process of
safeguarding the privacy of an individual. It pertaining to the manner
in which information that a patient has disclosed to a physician or
researcher in a relationship of trust is treated, with the expectation
that such information will not be disclosed to unauthorized parties
without permission (Plomer, 2005). Scholars have noted that the
necessity of safeguarding the privacy of personal information is usually
weighed against the necessity of sharing the information that
incorporates the potential to benefit the public good. The development
of innovative and new medical treatments necessitates that information
is shared from DNA sequencing, repositories and databanks, quality
assurance efforts, as well as public health measures (Plomer, 2005). It
is imperative that researchers have a clear comprehension of the manner
in which the competing values would be viewed, as well as the manner in
which the goals of the researchers can be balanced against the competing
needs. It is imperative that the type of health information that is
collected is balanced against the magnitude of harm that would occur in
instances where unauthorized disclosure of the information occurs
(Plomer, 2005).
While there have been numerous cases involving the violation of
informed consent requirement, patient privacy and confidentiality, none
has been more popular than the case of Henrietta Lacks. Indeed, these
are the ethical issues around which Rebecca Skloot’s book “The
Immortal Life of Henrietta Lacks” published in 2010 revolves.
Summary of the book
The book outlines the story of, Henrietta Lacks, a young black woman
who was diagnosed with cervical cancer on January 29th 1951. Henrietta
was taken to John Hopkins Hospital, which was the only hospital closest
to her home that treated blacks. At this time, it was generally believed
that noninvasive cervical cancer was not fatal unlike the invasive type.
However, Richard TeLinde, a cancer expert in the Hopkins at the time
disagreed and stated that the noninvasive type was simply the formative
stages of the invasive type, in which case it should be treated just as
seriously. TeLinde was infamous for using human subjects in experiments
without their knowledge or consent. He had been trying to develop living
samples derived from normal cervical tissue, as well as from living
samples of both invasive and noninvasive cervical cancer so as to
compare them. He got in touch with George Gey, the head of research on
tissue culture in Hopkins, who was determined to develop the first
immortal human cells that would be continually dividing and constantly
replenish themselves without dying. When Gey got the supply of cervical
cancer tissue from TeLinde from the women in Hopkins, he got a chance to
try growing living samples from the tissue. The tissues delivered were
for the women that visited Hopkins including Henrietta. However, what
separated Henrietta Lacks’ cells from those of other women is that
they were not simply surviving but also growing with a mythological
intensity. Her cells and tissues, therefore, formed the foundation of
tissue culture. Indeed, the tissues have been replicated and cloned
under the pseudonym HeLa cells, taking up the first two letters of
Henrietta Lacks (Skloot, 2010). Underlining the intense replication and
reproduction is the fact that almost every tissue culture lab in the
world incorporates some HeLa cells. Of particular concern, however, is
the fact that neither Lacks nor her family were informed about the use
of the cells in the experiments or even had their consent sought. In
fact, the family came to know about the use of the cells about in 1973
when researchers came looking for them asking for their cells to be used
in studies (Skloot, 2010). Indeed, scientists investigating HeLa
started using Henrietta’s husband and children in experiments and
research without obtaining informed consent (Skloot, 2010). Ironically,
as much as the HeLa cell line formed the basis for a significant number
of medical advances such as chemotherapy, polio vaccines, gene mapping,
cancer drug tamoxifen, in vitro fertilization, as well as treatment for
diseases such as Parkinson`s disease, leukemia and influenza, her family
has been living in poverty and has not benefited much from her cells.
Skloots notes that one of Henrietta Lacks’ sons is living in the
streets as a homeless man, while her daughter who tries to obtain
knowledge about the mother that she never knew cannot even afford health
insurance (Skloot, 2010). Even more appalling is the fact that the DNA
information of Henrietta Lacks has been published and given to other
companies without the consent of the family. This is a direct affront on
the privacy of the family and the right to have their personal
information kept private and only used within the direction of the
family (Skloot, 2010).
Critical analysis
Needless to say, the story outlined in the book touch immensely on
research ethics. This is especially with regard to informed consent. It
is worth noting that, all factors held constant, Dr. Gey and Dr. TeLinde
undertook this research without following the due procedure pertaining
to informed consent. This is especially considering that they used to
subject their patients to experiments without the patients’ knowledge
or even without obtaining the informed consent from the patient (Skloot,
2013). This trend was continued about 20 years after the death of
Henrietta Lacks, when scientists started contacting the family and even
subjected them to further experiments without their informed consent
(Skloot, 2013).
An informed consent that is ethically valid for research must
incorporate a number of components or meet some conditions. First, it is
imperative that the informed consent incorporates disclosure where the
potential participant is informed as fully as the researchers possibly
can about the nature, as well as the purpose of the research, procedures
that would be used, expected benefits to both the society and the
participant, not to mention any foreseeable stresses, risks, discomforts
and alternatives to the participation of the patient in the research.
This disclosure should also incorporate a statement outlining the
procedures that have been put in place to safeguard the anonymity and
confidentiality of the participant, as well as any available medical
treatment or compensation in case of research related injuries. Second,
informed consent must incorporate understanding where the participant
has clear comprehension of the things that have been explained and is
provided with a chance to ask any questions he or she has and have them
answered. This underlines the fact that the document pertaining to
informed consent must avoid technical jargon and be written in the
simplest layman’s language. Third, the informed consent must
incorporate voluntariness, where the participant voluntarily makes the
decision to participate in the research without any coercion on the side
of the investigators or researchers. It is worth noting that such
participants should also not be offered any promises of benefits that
would be unlikely to result from their participation. Fourth, informed
consent must incorporate competence where the participant is
sufficiently competent to give his or her competence. In instances where
the participant is not sufficiently competent as a result of an
emergency, disease or mental status, it would be imperative that the
investigators get the informed consent of a designated surrogate who
would only provide the consent if the participation is in the best
interests of the patient.
Needless to say, the researchers involved in this case did no fulfill
any of the conditions stipulated. Not only did they not inform Henrietta
Lacks or her relatives of the fact that her cells would be used in the
experiment, but the investigators continued hiding the fact even after
her death. Indeed, it’s not surprising that her family was surprised
to be approached by scientists twenty years after Henrietta`s death.
These scientists proceeded to involve them in research without seeking
their informed consent either.
On the same note, it is worth noting that the privacy of the patient’s
information was not protected. This would be evident from the manner in
which the cells have been replicated, reproduced and sold to numerous
companies and laboratories around the world. This information was
released some years ago by a certain newspaper either deliberately or by
mistake. While the information was later taken off the company’s
website, it had already been downloaded by 15 people, which means that
such information could be in unauthorized hands already (Skloot, 2013).
Researchers had insinuated that the cells have undergone so much change
over time that they could not accurately tell or reveal anything about
the Lacks. However, Skloot, in an opinion column at the New York Times
noted that such claims are far from accurate as scientists have used a
certain public website, uploaded the HeLa’s genome and obtained a
report that is full of Henrietta Lacks personal information, as well as
that of her family (Skloot, 2013). This only means that the personal
information of great grandchildren of Henrietta stands at risk of
falling into the wrong hands, which is not desirable. It is worth
noting, however, that the use of the pseudonym HeLa was an effort to
cover the identity of the person from whom the tissues had been derived.
Indeed, Gey had tried to give other names when asked about the source of
the HeLa cells. While the motive for this may be unclear, the efforts
were clearly not sufficient to protect the information.
Nevertheless, while these issues are pertinent, it is worth noting that
the research was done at a time when laws pertaining to informed consent
or even patient privacy laws were yet to be as comprehensive as they are
today. Indeed, it was not uncommon for physicians to undertake research
or experiments on their patients without the patient’s consent or even
knowledge.
Personal opinion
While there may be differing opinions as to the importance of obtaining
an informed consent in the case of Henrietta or any other human
subjects, I hold the opinion that informed consent should be a
requirement for any research involving human subjects.
First, informed consent guards against the exploitation of the subjects
or even their coercion to take part in a research that they were
unwilling to take part in, to start with. The basis of informed consent
remains that the individual or potential subject will have varied
aspects pertaining to the research in which his participation is being
sought explained to him or her in a simple language that allows for full
comprehension of all the elements. It allows them to ask questions and
seek answers to any issues that are unclear to them before or even in
the course of the research. This means that there is little chance that
they would be exploited as was the case for the Lacks, who were shoved
between laboratories and scientists and experiments without informed
consent. It is understandable that they became extremely skeptical about
any individuals that called to enquire about Henrietta’s cells that
they initially do not even want to be associated with the research by
Sckloot.
Moreover, the informed consent requirement would allow for the
safeguarding of the confidentiality and privacy of the personal
information of the human subjects that participate in the research. The
case of Henrietta Lacks presents extreme complexity especially with
regard to the importance of sharing such information among scientists
without seeking the consent of the owner of such tissues. Of course, it
is well acknowledged that sharing such information among the experts in
the medical research field has been extremely crucial to the entire
world as far as the advances in medicine are concerned (Miller, 2012).
However, it is imperative that one acknowledges that there were certain
risks to which the subjects or their descendants were exposed. For
example, personal information pertaining to such health matters may be
used to discriminate against the descendants of Henrietta Lacks in cases
of employment opportunities.
In addition, it would allow for the trickle down of the benefits that
would result from the research to the subjects. It is well acknowledged
that informed consents would not incorporate benefits that the subjects
would reap from their participation in the research. However, informed
consent allows the human subjects to have relative control over the
manner in which their tissues are used or even the experiments to which
they are subjected. It is highly regrettable that despite the fact that
Henrietta Lacks’ cells are used by almost every individual that has
taken any medicine stronger than aspirin, yet her family and descendants
can barely afford to pay their way through life (Miller, 2012). The
industry that is set upon HeLa cells is undoubtedly a multi-billion
dollar one, yet the descendants of the person whose cells set its
foundation cannot even afford health insurance. Informed consent would,
therefore, have allowed the family to patent the cells, in which case
they would at least have had a semblance of benefits from the same.
However, some scholars have argued for limited protection of the
privacy of the information derived from such research especially in
instances where there is bound to be immense benefit to the public good
(Miller, 2012). Indeed, there have been opinions to the effect that not
only were no laws flouted in failing to get an informed consent from the
patient but also that such a consent would have restricted the immense
benefits that have been derived from the cells. Of course, it would be
inaccurate to ignore the immense contribution that the HeLa cells have
made to the medical world (Miller, 2012). The argument would not revolve
around limiting their use in enhancing the medical field, rather it
revolves around the treatment of the human subjects not as tools and
instruments in the lab but as human beings who have their own feelings
and thoughts as to what should happen to any part of their body that is
used in the advancement of science.
In conclusion, the use of human subjects in medical research introduces
varied controversies especially with regard to informed consent and the
privacy of personal information of the subjects. This is the case for
Henrietta Lacks, a black woman whose cancerous tissues were obtained
without her knowledge or consent and used in developing the current
multi-billion industry cell tissue industry. Her cells have been widely
circulated around the world in almost every cell tissue lab. Ironically,
her family still lives in abject poverty unable to afford the basic
amenities including healthcare insurance. In addition, the privacy of
her health information has been violated with some scientists allowing
for access of her genome by the public.
While there may be differing opinions, enforcement of informed consent
would be imperative in every research involving human subjects. This
would protect the human subjects from exploitation, ensure that their
privacy is protected and ensure that they reap the maximum benefits from
the research.
References
Skloot, R (2013). The Immortal Life of Henrietta Lacks, the Sequel. The
New York Times Sunday Review. Retrieved from HYPERLINK
“http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-h
enrietta-lacks-the-sequel.html?pagewanted=all&_r=0″
http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-he
nrietta-lacks-the-sequel.html?pagewanted=all&_r=0
Skloot, R. (2010). The immortal life of Henrietta Lacks. New York: Crown
Publishers.
Plomer, A. (2005). The law and ethics of medical research: International
bioethics and human rights. London: Cavendish.
Miller, T. (2012). Ethics in qualitative research. London: SAGE.
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