Essay on Importance of Informed Consent, Confidentiality, and Ethical Decision

Introduction

While helping others, nurses have a social contract that binds them with those in need. In this case, social contract refers to the relationship between the nurses and the society and the expectations of each group (Reeves et al., 2013). The existence of these expectations and relationships ensures harmony in the provision of medical care. That relationship gives the nurses the authority required to meet the healthcare needs of their patients, clients, and society at large. Importantly, social contract enables nursing professionals to engage in political and legislative efforts that promote research, nursing education, and practice to improve the healthcare as well as gain a better understanding of the social ethics and justice that impact individual health and global health.,

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Disregard for Informed Consent

The publication of The Immortal Life of Henrietta Lacks in 2010 attracted heated debates in the mainstream media with the idea of informed consent dominating the discussions. Other themes that dominated the discussions include the welfare and fair compensation for the vulnerable, scientific discovery, and patient control. Even in the midst of these debates and criticism, a group of researchers released the entire genome sequence of HeLa cells strain. Making that information public did not violate any rules because many funding organizations and research groups depend on vast sharing of genomic data to facilitate further research (Paltoo et al., 2014). However, given that the data shared contained information about Henrietta Lacks and her family, concerns about informed consent and privacy intensified. In response to the increasing criticism and attacks, the researchers withdrew the data from the public domain and met with Lacks family. Although the parties agreed to proceed with the research in a highly controlled environment, these tendencies depict the ease with which some healthcare practitioners break the social contract with the society and their patients. In particular, HeLas' story perfectly demonstrates the worrying issues about how medical practitioners use human biospecimens, sometimes which belong to their patients, without deliberating on the legal, moral, and ethical perspectives that revolve around informed consent.

According to the Department of Health (2014), informed consent refers to the process of facilitating an individual to make decisions voluntarily about taking part in a research while understanding the objective, processes, risks involved, and potential benefits. Informed consents should be anchored on strong ethical principles such as respect for the participants, justice, and beneficence. Although many laws have been enacted that prohibit tissue harvesting in the recent past, the practice of tissue removal from patients without obtaining their consent was approved during the time Henrietta Lacks cancerous tumors were harvested. That action helped the doctors gain a better understanding of the human body as well as advance medicine to another level. However, the doctors committed a bigger mistake by keeping the whole process a secret from Lacks family. The doctors allowed the family to languish in poverty and ignorance while their mothers tissue created a multi-million dollar industry and revolutionized modern medicine.

While the practice of using human tissues for research is highly welcomed, it is the relationship between the patient and the doctor that matters most. Typically, many patients are ignorant, fearful of the medicine and the sicknesses hence rely on the health practitioner to help them heal. The society trusts the nurses and doctors to use the resources availed to them effectively to improve their health. In other words, there is a special relationship between the society and the nurses whereby nurses are accorded trust and expected to behave professionally to promote the well-being of the society. When that relationship or trust is broken, the social contract between the nurses and the society is nullified, thus undermining the key significance of health practitioners.

Responsibility and Accountability

According to Davis (2017), responsibility refers to the obligation to carry out duties through the use of sound professional judgment while being answerable to the actions taken and decisions made in the process. On the other hand, accountability refers to the ability to give an account of one's decisions and actions when providing health care services. The two concepts are intrinsically connected as they form the cornerstone of nursing practice. In case of research, the nurse should be transparent with the patient by providing all the information about what their body parts are expected to achieve. While the society and the patients are expected to trust the doctors, a survey by Kieger (2010) shows that a significant majority of the public has attitudes of distrust toward medical research. This majority does not trust the nurses and the doctors to be open and honest and tell them the truth. They are also worried that the privacy of their medical records is not respected. That skepticism is demonstrated in The Immortal Life of Henrietta Lacks as an injustice toward Deborah Lacks (Henrietta's daughter) that caused her to struggle in life and denied her happiness and freedom. While nurses, scientists, doctors, and researchers have a responsibility of informing the patients or their families how they are connected to the research, Deborah struggled to understand the causes of her mothers death and how she contributed to medicine. Consequently, she wished she was educated. If I'd had more of it, maybe this whole thing about my mother wouldn't have been so hard (Skloot 251-252). The failure to show accountability and responsibility is further illustrated when the doctors did not inform Henrietta's family about her death until after twenty years when they included other family members in the research.

Ethical Practice

In nursing social contract, ethical practice entails not only acting as a moral agent but also knowing the correct actions to take and the preparedness to implement the actions (Holt and Convey, 2012). While the public wants their humanity to be respected and acknowledged, ethicists and physicians understand that doing the right thing is usually complicated even though it seems straightforward to the public. Nonetheless, the social contract reminds and binds the nurses to always put the needs of the patients first. However, this social contract was broken in The Immortal Life of Henrietta Lacks when the doctors carried out the research without notifying Henrietta or her family. Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge. Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment, (Skloot, 30). In addition, Henrietta was not aware that the treatments had made her infertile. Even though Hopkins hospital had a policy that required doctors to tell their patients that they would become infertile as a result of treatment methods, Henrietta was never informed mainly because she was black. As a black woman, she became a victim of negligence. To make matters worse, the researchers continued to collect more genetic material from the family for development of HeLa cells under the pretext of cancer diagnostics for many years after their mother died. These behaviors demonstrate egregious breaking of the social contract and unethical behavior on the part of the doctors.

Conclusion

In conclusion, the publication of Henrietta's story elicited many debates and concerns about the ethics and policies in biospecimen research. Even though the development of HeLa cells took place many years ago, the recent public display of genetic sequence raises questions on the extent to which the medical fraternity abides by the social contract. The inadequacies noted during the recent events demonstrate that policies should be guided by the social contract between the nursing profession and the society. Importantly, Henrietta's story underscores the significance of the nursing profession to build trust among the public.

References

Davis, C. (2017). The importance of professional accountability. Nursing Made Incredibly Easy!, 15(6), 4. doi:10.1097/01.nme.0000525557.44656.04

Department of Health, E. (2014). The Belmont Report. Ethical principles and guidelines for the protection of human subjects of research. The Journal of the American College of Dentists, 81(3), 4.Holt, J., & Convey, H. (2012). Ethical practice in nursing care. Nursing Standard (through 2013), 27(13), 51.

Krieger, D. (2010). Immortal Cells, Enduring Issues. Johns Hopkins Magazine. Retrieved 1 March 2018, from http://archive.magazine.jhu.edu/2010/06/immortal-cells-enduring-issues/

Paltoo, D. N., Rodriguez, L. L., Feolo, M., Gillanders, E., Ramos, E. M., Rutter, J. L., ... & Caulder, M. (2014). Data use under the NIH GWAS data sharing policy and future directions. Nature genetics, 46(9), 934.

Reeves, S., Van Soeren, M., MacMillan, K., & Zwarenstein, M. (2013). Medicine and nursing: a social contract to improve collaboration and patient-centered care? Journal of Interprofessional Care, 27(6), 441-442. doi:10.3109/13561820.2013.846033

Skloot, Rebecca, S. (2011). The Immortal Life of Henrietta Lacks. New York: Broadway Paperbacks. Print.