Carl
Stuart.
Stuart
Medical Series: Book Review
Property
Ownership Rights as Applied to Medical Research.
In the book, The Immortal Life of Henrietta Lacks,
the author, Rebecca Skloot, states the life story of Henrietta Lacks, a modest woman whose cells were used for
medical research without her consent. She was employed in a tobacco farm. Her
cells were used to develop the first immortal human cell lines, commonly known
as the HeLa cells. Research done on HeLa cells led to the inception of a
multibillion dollar industry which specialized in the trade of biological
specimens. The HeLa cells have been traded in large amounts all over the world,
and massive profits have been made during such trading. Lacks’ family has not
benefitted from these business ventures. In fact, the family learnt that Lacks’
cells were still alive twenty years after her death. In her book, Skloot has
raised the issue of whether people own the tissues in their body in the same
way as they have property ownership rights to a car, a piece of land or even a
house (Skloot 23). This paper analyzes the concept of property rights as it has
been explored in the book, and what needs to be done about it and rationale
behind such an action(s).
In the book, Skloot points
out the importance of property rights over human tissues. There are questions
whether Lack owns her cells (the HeLa cells), which were used in medical
research, and are still being used today (about 60 years after her demise). The
author explains, using examples, how body tissues have not been patented. In
fact, it was the first lawsuit in 1980s, which raised the issue of patenting
body cells. This lawsuit involved a person named Moore, who was involved in
another scientific experiment which led to the development of the strains of
cells known as Mo (Skloot 140).
Moore had a malignant form
of cancer, and the attendant doctor recommended that it could only the treated by
excising and replacing the spleen tissue. The doctor performing the operation
on Moore collected sample tissues from the semen, spleen and bone marrow. Moore
had signed a consent form, thereby giving the hospital the right to use his
cells for research (Skloot 146). However, Moore had queried if his cells had
any commercial value, but his doctor answered that they had no commercial value
at all. But Moore suspected that the doctors were not disclosing the full
information to him. He later found out that his cells were being used to
develop a cell line which was called Mo, and he thereafter sued the doctor for
theft. His doctor, Dr. Golde, had patented his cells, and had already profited
from them. Moore’s cells were said to have been vital in the acquisition of the
patent. The reason for this is that not all cell strains are worth patenting (Landecker
179). However, Moore’s cells produced a unique form
of protein which could be utilized to manufacture medicines that could be used
in the treatment of cancer (and other infections), and in the research for a
HIV vaccine. If Dr. Golde had not patented these cells, Moore could not have
profited the sale of his cells. This lawsuit against Dr. Golde was opposed by
scientists all over the world, since they perceived that such a litigation
would encourage every person(whom they extracted research specimens from) to
sue them for cell lines that they had used in research. The scientists argued
that the only people with legitimate rights to these cells were the scientists
who had extracted them, and the financiers who had provided finance that
enabled these strains to be developed. They asserted that without the valuable
contributions of these people, the cultures could not have existed in the first
place (Lenk et al 41). Personally, ethical
morality avers that the scientists (and their financiers) and the patients
(from whom the specimen were extracted from) should proportionally share the
profits derived from the sale of the patented human cells and tissues.
Undoubtedly, the scientists (and their financiers) would take a significantly
bigger proportion of the proceeds from such sales, while the patient would
receive a specific percentage from such sales.
Likewise, the lawsuit
against Dr. Golde caused numerous debates among policy makers, scientists and
lawyers who unanimously stated that giving the individual patient the rights to
the patent would result in many logistical problems that would be hard to
solve, and it would also impede the development of medical sciences. Fortunately,
the lawsuit against Dr. Golde was dismissed by the court, and the judge even
cited the case of the HeLa cells, where the owners of the cells had not come
forward to claim the rights to ownership. Later, Moore appealed against this
verdict in 1988 in a California court, and he won the appeal (Lenk
et al 45). The judge comments were that the patient
has the right to manage what is done to their body, and therefore he has the
right to what becomes of their cells. Fortunately, Dr. Golde appealed against
this verdict and emerged victorious. Moore was never given any portion of the
profit, but the judges agreed that Golde had erred by not taking informed
consent, and was thus guilty of breaching the principle of fiduciary of duty
when he used his power as a doctor to violate the trust that the patient had
placed on the doctor-patient relationship (Skloot 148). The court ruled that
the doctors should disclose to the patients their financial interests, although
this was already a legal obligation (Lenk et al 46). Personally, it is evidently clearly that the rights of
the patients to their sample tissues are overruled by the need to advance
medical knowledge and therapeutics. Moreover, these patients must understand
that they are promoting the common good of the society, and that their lawsuits
against doctors are based on retrogressive assessments of the prevailing
circumstances.
Till today, matters
pertaining to tissue ownership rights are still unclear. In the U.S.A, a person
has a right to privacy. This right gives them complete control of their body,
and they are therefore solely responsible for making decisions regarding their
bodies, such as procreation and refusal of medical care. However, the
protection of privacy of the human body does not apply to the tissues of the
body. Hence, once a tissue has been detached from the body, it stops being the
property of the owner (Landecker 175).
Personally, this prudential aspect of the constitution ensures that scientific
research and the advancement of medical sciences are not curtailed and
restricted by human subjects who make the wrong assessments(of the existing
circumstances) and thereafter arrive at improvident decisions.
There are several questions
that have been raised in an attempt to comprehend the logic behind the reasons
for the legal distinctions between right to privacy and right to ownership of
tissues. Landecker states “Does it mean that when the cells or tissues are
detached from the body, they cease being part of the person’s body? Or is it that
these tissues have an endless potential value to science and research?” (176).
However, it is clear that if the HeLa cells availability was limited, the
various advances in medicine such as discovery of the polio vaccines and other
scientific advancement would not have been made (Landecker 176). Personally, the logical basis for such distinction is
that the tissue biopsies (and excisions) cease to be part of the patient’s body
upon the completion of the biopsy or excision procedure. The reason for this is
that the tissues are not going to be grafted back into the body of the patient,
and that the patient also understands that these tissues have been lost from
his body forever.
Other cases concerning
tissue ownership rights have also been taken to courts. However, the courts
have based their verdicts of the ownership rights on the basis of the existing
medical circumstances. Apparently, medical advancement is only possible if the
researchers are not frustrated by private agenda. Hence, it is imperative that
medical research should be regulated. If the development and utilization of
cell lines are not regulated, the whole process would be turned into a business
venture with the cell strains ending up in the hands of the highest bidder, who
may not have the best interest with regards to the promotion of public health
and safety. Hence, non-regulation of cell lines debases the principles of medical research. Moreover, the integrity of bio-repositories
would be compromised. Also, accountability in research would be unattainable,
because it would be compromised, since it would be focused on making money.
Furthermore, medical research would also be influenced by prejudicial
interests. For instance, with legal rights on body tissues, the donors would
decide on how their tissues are stored and used (Lenk et al 659). Personally,
this means that it would be possible for some people to come up with a queer
conditionality, such as the right to determine which ethnic group is to benefit
from the knowledge accrued from the research on his tissues. This would
contravene the precept of equality in the provision of health care. Hence, it
is clearly evident as per the information provided above, that a patient must
never be given the rights to tissue specimens that have been removed from his
body, since the provision of such rights would impede the advancement of health
sciences, and it would also undermine moral and ethical practices in the
professions of health sciences.
Nonetheless, despite the
fact that the laws so far don not recognize the rights to ownership of tissues,
it has however given the individual the right to withdraw their tissues from
research at will. However, they do not have any right over how these tissues
are used
(Lenk et al 659). Personally, this directive is imprudent
since it gives the individual the right to interfere with medical research.
Since the cases of Lacks
and Moore, there have been other cases which have shown that there is a need to
address the issue of property rights over biological material, while at the
same time ensuring that the scientific research is not curtailed. Although
scientists have clearly stated that the contribution of the financiers and the
scientist led to the development of a culture, and thus it is only their
opinions that count; it is important to bear in mind that the culture could
also not be developed without the original material given by the donor. This
therefore means that the contribution of the donor and other stakeholders are
important. As such, they should have a stake in whatever profits that may be
obtained from the material extracted from the body. For instance, the HeLa
cells which have been sold in millions of sets have created billions of dollars
in profit, but not even a single penny (from these profits) has benefitted the
surviving members of Lack’s family as they still live in poverty (Solbakk
et al 390). According to Skloot, Lacks’ daughter
queries as follows: “If her mother’s cells have made such a huge contribution
to medical advancement, how come her family does not even have medical
insurance?”(123). this paper does not call for the commercialization of human
tissues, but it just asserts that the donors of such specimens need to at least
benefit from the commercialization of their specimens.
Scientists have clearly
stated that not all cell strains are important for medical research. In order
to avoid a situation whereby people sell their specimens (thus hindering
medical advancement), there should be regulations that recognize the ownership
of these unique tissues and cells, and thereby require the doctors to disclose
this information to their respective patients. Slavin’s case epitomize this
idea. The doctor recognized that Slavin (a patient who had hemophilia) had
developed cells which had potential financial value (Solbakk
et al 389). The reason for this unique observation
was that the patient had received blood from many donors. Blood at his time did
not go through the rigorous process of testing before being transfused into a
patient. As a result, Slavin had received blood with different strains of
hepatitis B virus, and his body developed a unique type of anti-hepatitis B
antibodies. When his doctor discovered this, he informed him. His blood was
then used to develop a vaccine for hepatitis B, and he profited from this
venture (Skloot147). Personally, this clearly illustrate that the development
and commercialization of human cells can be mutually beneficial to all the
stakeholders. Hence, mutual benefit can be accrued in all other similar
circumstances.
The field of biotechnology
is rapidly developing. This creates many ethical concerns that must be fully
resolved. Tissue ownership rights are one of the major unresolved issues in the
field of biotechnology. Although it is not possible to draw a line of distinction
between protecting the right to medical and scientific research, and the
individual property rights; it is evident that a lot need to be done to promote
a consensus between these two distinct rights. This should however not be done
at the expense of medical and scientific research. Having regulation that
allows for extremely limited patent rights in special cases, such as that of
the HeLa cells and Moore case will ensure that the donors of biological
specimens also get to benefit from their contribution. The public also need to
be actively involved in finding the balance between these two conflicting
issues.
Work
Cited
Landecker,
Hannah. Culturing Life: How Cells Became Technologies. Cambridge, Mass:
Harvard University Press, 2009. Print.
Lenk,
Christian, Judit Sándor, and Bert Gordijn. Biobanks and Tissue Research:
The Public, the Patient, and the Regulation. Dordrecht: Springer, 2011.
Print.
Skloot,
Rebecca. The immortal life of Henrietta Lacks. Sydney: Pan Macmillan,
2010.Print.
Solbakk,
Jan H, Søren Holm, and Bjørn Hofmann. The Ethics of Research Biobanking.
Dordrecht: Springer, 2009. Print.
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