The Immortal Life of Henrietta Lacks by Rebecca Skloot
In the Afterword, Skloot summarizes the main issues and legislation surrounding the collection and use of human tissue samples. Using her summary as an outline, examine the evolution of laws concerning tissue research and write a persuasive paper on the issue of whether or not people should be given legal ownership of, and/or control over, their tissues.
One of the questions that continue to surround the health issues and scientific research in relation to the ownership of body parts, blood, tissues, and other related organs removed from human beings especially for treatment purposes. There have several lawsuits in relation to the determination of the ownership of the tissues used for the treatment or research purposes within the health center. In the modern legal system, it is clear that individuals have lost the legal battle in the process of seeking to control the ownership of their cells and relevant tissues. This is because of the benefits, common good, universal advantage, in other cases, concurs with the concept of following the money. Modern health sector is characterized with issues that surround removal of tissues such as the case of Henrietta Lacks. On a daily basis, individuals have their tissues, body parts, and fluid removed without the next knowledge on how to proceed with the situation. It is vital for the law courts to determine effectively on how the issues in relation to tissue removal and rights should be solved thus ensuing the ethical aspect of the healthcare system and research. Currently, patients have the opportunity to sign consent forms, which aims at determining whether their tissues should be used following, their removal from the body.
Evolution of Laws Concerning Tissue Research
To understand the laws and regulations governing tissue ownership, it is ideal to focus on the treaties, laws, and relevant regulation that are in place to offer guidance of human research. Most of the events in relation to research and human research are under the influence of federal regulation despite the fact that the available regulations do not address the issue of tissue ownership. The origin of the laws governing human research originates from the declaration of Helsinki. The World medical Association with the aim of providing ethical principles in relation to the human experimentation developed this declaration. This reflects the first effort by the medical sector or community towards regulation of human research.
As Skloot notes, in the 1950s, it was legal for the medical practitioners to remove the tissues without the consent of the owner of the body tissues or organs (Skloot p. 68). In the late, 1990s, there was no clear directives towards the definition of the human research thus an opportunity to reduce the level of lawsuits relating to this issue. Despite the publication of the Lacks’ story, it is still evident that human beings still lose tissues for the human research without their consents in most cases. This relates to the fact that human beings are constant donors of tissues in the process of developing or donating blood that is kept in the banks for other purposes. This blood consent is stored in other files without the consent of the patients thus no directive for the ownership of the tissues in human research activities.
The declaration of Helsinki is not vital in the international law, but offers considerable influence to the national regulations and legislation (Lee p. 14). This declaration became known in 1964 thus undergoing crucial revision stages at about six different levels. In the context of the United States, the Declaration of Helsinki is integrated in the common law or rule. The common rule focuses on the regulation of protection in relation to the execution of human research. About sixteen federal agencies have incorporated the essence of the common rule towards offering guidance to the execution and organization of human research within the society. The role of the common rule is to offer details, composition, and functions of the IRBs (Institutional Review Boards) towards the protection of human participants during research activities. Common rule does not offer accurate illustration on the ownership of the tissues that are applicable in the human research. It does not also apply to tissues obtained during the postmortem activities. Despite these weaknesses in the common rule, there is the essence of informed consent that requires that the researcher must offer critical analysis and information with reference to the purpose of research and the timeframe for participation by the individual in the context.
In this concept, it is ideal for the participants to obtain sufficient information in order to make vital decision of how to participate or contribute towards the achievement of the objectives and goals of the study (Lee p. 2). Transparency is vital in the process of offering informed consent by the participant during organization and execution of human research thus the opportunity to enhance ethical standards in the medical field. The modern concept of human research is guided by informed consent despite the fact that practitioners or researchers do not offer accurate and sufficient information. This makes it common for patients to participate in human research without accurate information on the purpose of the research. Common Rule has loopholes in its adoption and implementation towards the protection of ethical issues in human research. This is through the essence of allowing human research in the absence of informed consent in unique circumstances (Lee p. 3). This relates to its definition of the term human subjects referring to human research participants that the practitioner interacts with during the study.
Legal ownership of, and/or control over, their tissues
The current situation of minimal ownership of tissues within the field of research proves to be unethical in relation to the violation of the human rights to privacy (Fry et al, p. 395). Right to privacy entails that human beings have the authority and autonomy for any issue that relates to their body and relevant organs. One of the main reasons why human beings or individuals should obtain ownership for the tissues is because they have control over their bodies. Their body is of the main interest in this issue. If individuals have control over their bodies, they should also have control over the use of relevant parts of the body thus including the concept of tissues within the research field. Limitation of the ownership of the tissues by individuals is a violation of the privacy act or right enjoyed by the patients. It is ethical to have offer human beings the right to own their tissues and any relevant use that might be associated to the body organ whether for the universal benefit or common good in enhancing the medical aspect of the society.
The other reason for offering the ownership of body tissues to individuals is that they have the ability to make crucial and effective decisions on how to use their body organs and relevant tissues within the health sector. Individuals have the ability to make decisions since they know what is best for them in relation to health issues and research. This ability to make decisions should be exercised in the filed of research since denial of the decision-making concept because of advancements in medical aspects or technology is inhuman in nature (Fry et al, 284). Competent patients and individuals are in the right mind to decide on how to use their body parts or organs thus the concept of tissue ownership would enhance the expression of autonomy in the context of tissue research.
In most circumstances, doctors and other relevant practitioners adopt the tissue or remove the body organs for the financial gains. This should not be the primary factor for the illegal donation of the human body organs. In normal circumstances, individuals feel free to offer their tissues and other body organs for health issues. These activities usually aim at enhancing the health statuses of other individuals thus the achievement of universal benefit or common good. It is the duty of the individual to determine on how the body organs or tissues should be used within the health sector. This is because doctors and researchers in the contemporary world, like in eh case of Lacks, seems to be malicious in their execution of research. The doctors and researchers remove the organs and tissues for their personal gains thus the essence of patenting the developed immortal cell lines. If individuals were given the ownership of body organs and tissues, they would have the ability to determine the use of their tissues. This is enhancing the authority to apply tissues for the common good thus helping other individuals in need.
Modern society is a finance-driven entity in that the main goal is to obtain financial benefits from different situations and events (Landecker p. 82). It is ideal for the organization conducting research to inform human participants on the issues and purposes of research as a reflection of the transfer of ownership. Researchers make much money from the tissues they do not own. This should change in that patients should claim some part of the financial benefit in the absence of the informed consent. This is because human beings have a great feeling in the ownership of their body despite the fact that this does not hold strongly in the court of laws. This is like stealing from the participants. The laws and regulations should promote voluntary research practices by individuals in the case of informed consent. If practitioners conduct human research without the knowledge of individuals and decides to make money out of the process, it should follow that the owners of the organs or tissue be co-beneficiaries of the action.
It is unethical to treat human beings like animal that have no ability to offer consent in the participation of research. The argument that ownership of tissues and organs will limit the essence of human research does not hold effective ground. This is because researchers take advantage of the situation to make money out of the tissues belonging to other individuals like in Lacks’ case. Laws and Regulations should keep this under critical watch through effective application of informed consent and recognition of the ownership of the tissues.
Works Cited
Jastone, Lee O. Federal Protection for Human Research Subjects: An Analysis of the Common Rule and It’s Interactions with Fda and the Hipaa Privacy Rule. New York: Novinka Books, 2006. Print.
Skloot, Rebecca, and Gregory Mone. The Immortal Life of Henrietta Lacks. Random House Children’s Books, 2013. Print.
Landecker, H. (2009). Culturing life: How cells became technologies. Cambridge, Mass: Harvard University Press.
Fry, Sara T, Robert M. Veatch, and Carol Taylor. Case Studies in Nursing Ethics. Sudbury, MA: Jones & Bartlett Learning, 2011. Print.
