DQ What are some of the major ethical issues in conducting research that impacts the advanced registered nurse?
NUR 513 Topic 7 Discussion 2
Informed consent is a cornerstone of ethical research that advanced registered nurses (ARN) must rely on when approaching evidenced based research. Informed consent is vitally important and ensures that the individuals involved fully understand the research process, all risks involved, and have their own freedom to make their own decisions regarding their involvement. Individuals involved in studies need to “have the capacity to reason, decide, and act and because they might be presumed to know better than anyone else what their interests are…[and] they have the right to make decisions concerning their healthcare” (DeNisco, 2024). With the possible risks and participant involvement there are a myriad of ethical dilemmas to consider.
One of the ethical dilemmas that ARNs face when obtaining informed consent for research is properly educating patients with the roadblock of medical terminology. When discussing procedures, risks, and studies with patients, the complexity of medical terminology can lead to challenges or concussion when obtaining informed consent. To ensure that patients comprehend the complexity of the study, nurses need to ensure that it is informed in the patient’s preferred language, it needs to be presented at a level that the patient may understand, and all questions need to be addressed.
Another ethical issue involves the trust developed between patient and ARN to ensure the nurse advocates for a rigorous ethical review process to uphold the established guidelines of the study. ARNs need to be vigilant in upholding the set ethical guidelines set even if it requires the study to be modified or paused to ensure the safety and welfare of the patients. ARN’s role in the process of informed consent extends beyond obtaining the consent, it requires clear communication, proper education, and trust between the patient and the ARN. By embodying these principles, ARNs may uphold the ethical principles of consent with participants in research studies.
DeNisco, S. (2024). Advanced practice nursing: Essential knowledge for the profession (5th ed.). Jones & Bartlett Learning. ISBN-13: 9781284264661
To be frank, the human race does not have the best track record related to ethical medical research. Nazi Germany and the German medical community were very complicit in conducting inhumane, cruel and unethical human research during World War II. After World War II, the Nuremberg trials were shepherded to hold those responsible for some of the heinous acts of “research” conducted in concentration camps (Vaughn, 2017). The outcome of these trials came to be called The Nuremberg Code, which are ten points that outline what is deemed permissible medical experimentation (Vaughn, 2017).
The Children of Willowbrook, was another situation that began in Staten Island, NY in the 1950s when a children’s state school for the mentally disabled was purposely infecting patients with Hepatitis (Vaughn, 2017). The facility was overcrowded, understaffed, and patients were living in inhumane conditions. This facility did not close until the 80s.
Then there was the Tuskegee Syphilis study that took place in Alabama from the early 1900s all the way to 1972. Basically, a small group of black men were used to study the long-term effects of Syphilis on the human body. This was done without informed consent and continued on even after penicillin was discovered and a by 1947 was a well-known cure for Syphilis (CDC, 2020). These men were not offered treatment, and the study did not end until 1972 when a journalist took wind of the situation and created public outcry (CDC, 2020). The Tuskegee Syphilis Study led to the Belmont Report and the National Research Act of 1974. The Belmont Report provides an ethical framework to conduct research stemming from the principals of respects, beneficence, and justice (Vaughn, 2017). Respect, referring to autonomy of the patient and informed consent, and the right to confidentiality. Beneficence and nonmaleficence, meaning “doing good” and avoiding doing harm. And lastly justice, meaning that research must be conducted fairly, in a non-exploitative manner, and there must be a fair distribution of cost to both individual and community.
Why we now have codes of conduct, laws, and oaths to guide us in ethical practice related to human research, and care of patients, one must not forget that ethical practice is one that must constantly be reexamined, adapted and enforced. As an Advanced Practice RN (APRN), it is of up most importance to advocate for the patients, their autonomy and their rights. The APRN can play a major role in developing research design, frameworks and implementations so there is a duty to do so in an ethical manner. So when developing EBPs, it is important do rigorous research and closely follow the EBP process.
Center for Disease Control and Prevention [CDC]. (2020). U.S. public health services syphilis study at Tuskegee: The Tuskegee timeline. https://www.cdc.gov/tuskegee/timeline.htm
Vaughn, L. (2017). Bioethics: Principles, issues, and cases (3rd). Oxford University Press.
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I do agree with your finding that the process of making clinical research on human fair and just has achieved remarkable progress over the years. It is the role of the advanced practice nurse to promote the safety of the patients and ensure that the care for the patients and clinical procedures are guided by the ethical standards (Milliken, 2018). I do agree with you that the Nuremberg code of ethics to guide the clinical research was a great step forward towards achieving human dignity in scientific research. The Nuremberg code focus ten key elements of subject giving voluntary consent, the objectives of the research should be for the greater good of the society, the human experiments should be carried out after initial experiments on animals, it should avoid any injury or physical damage, the risks should not outweigh the benefits, subjects should be adequately protected, the research should be conducted by qualified scientists, subject can terminate their participation any time and willingly, incase any death, injury or disability is likely to occur then the scientist should terminate the experiment (WHO | Nuremberg code turns 60, n.d.)
WHO | Nuremberg code turns 60. (n.d.). WHO. https://www.who.int/bulletin/volumes/85/8/07-045443/en/
Milliken, A. (2018, January 31). Ethical Awareness: What It Is and Why It Matters. Ojin.nursingworld.org. https://ojin.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-23-2018/No1-Jan-2018/Ethical-Awareness.html
Re: Topic 7 DQ 2
Health research has a history of abuse, whereas participants were sacrificed for scientific gain (Doody & Noonan, 2016). These human rights violations within research spanned throughout the 20th century and made recognition of the importance of ethical nursing research to protect all involved. Good ethical nursing research implies adherence to ethical standards and studies are subject to scrutiny by an ethics board or committee, scientifically sound, researchers are supervised or have expertise, and ethical principles are adhered to throughout the process. Four common ethical principles to consider are autonomy, beneficence, non-maleficence, and justice. According to Doody and Noonan (2016), veracity, fidelity, and confidentiality must also be principles considered.
Veracity involves truth and avoids deception. Participants must understand all aspects of the study. In Los Angeles in 1989-91, over 700 minority babies as young as six months were given an experimental measles vaccine. Parents were not informed of the experiment or that the vaccine was unlicensed (Awadu, 1996). This killer vaccine led to the death of 1 of every 13.6 babies in one African experiment. Truth-telling is dishonored in at least two ways; first by lying or deliberately providing inaccurate information; and second, by omission or deliberately withholding information.
Participants entrust themselves to the researcher, which should reciprocate a two-way trust in return. Fidelity or a trusting relationship often leads to participants remaining in the studies, following directions, and knowing there will be no consequences for wanting to drop out at any time (Doody & Noonan, 2016). Confidentiality is another element to uphold. Recall taking a work-related survey asking about the boss or employer and how a breach in confidentiality will affect responses.
APRNs can ensure patient safety and rights in research by advocating for informed consent and overseeing study benefits to serve the greater society. Keep in mind, all research, in theory, can be harmful and should be considered a privilege and not a right especially when human lives are involved.
Awadu, K. O. (1996, August). Outrage! How babies were used as guinea pigs in a LA county vaccine experiment. The Conscious Rasta Report, 3(6). http://www.whale.to/vaccines/awadu.html.
Doody, O., & Noonan, M. (2016). Nursing research ethics, guidance, and application in practice. British Journal of Nursing, 25(14), 803–807. https://doi.org/10.12968/bjon.2016.25.14.803
RESPOND HERE (150 WORDS, 2 REFERENCES)
I do agree with you that the history of scientific research on humans in the past century was inhuman and in violation of the dignity to human life. Human life in both the spiritual and cultural understanding is considered sacred and must be treated with uttermost dignity. The indecent and gross human rights violation of the 19th and the 20th century have no space in the modern world of scientific and technological research. Therefore, it is the role of all the stakeholders involved in scientific research to ensure the set standards of the ethical considerations in scientific research are closely observed at all stages of the research (Milliken, 2018).. The advanced practice nurse roles should be focused on promoting safety of the patients and quality care. They should ensure that any clinical procedure done on the patient is out of the voluntary consent of the patient. The patient has the autonomy to choose on the available alternative intervention measures. Additionally, the nurses should act in the best good for the improvement of the patient’s health. The key ethical standards of beneficence and nonmaleficence should be the guiding principles of the nurse practice in helping the patient recover to better quality of life and good health (Haddad & Geiger, 2020).
One of the major ethical issues in conducting research is informed consent. With informed consent, “patients have a moral/ethical right to accept or refuse healthcare treatments regardless of risk, given the possession of decision-making capacity, an adequate understanding of the risks of refusal and the potential benefits of treatment” (DeNisco, 2024, p. 804). The advanced registered nurse’s (ARN) role is to educate, evaluate, and advocate for the patient’s understanding and decision regarding their healthcare. Another major ethical issue is privacy which is “more expansive conceptually and incorporates the right to avoid unwarranted interference on the part of others (Grace, 2004a) and freedom to grant or withhold access to information about oneself” (DeNisco, 2024, p. 820). The ARN should protect their patient’s personal identifying information as much as possible, but if the patient intends to hurt themselves or someone else, the ARN is mandated to report these plans to the authorities. One last major ethical issue is proxy decision making, which is the “act of deciding what healthcare actions are permissible for someone who temporarily or permanently has lost decision-making capacity, never had decision-making capacity (profound cognitive deficits), or is not yet considered to have sufficient maturity to make healthcare decisions (children)” (DeNisco, 2024, p. 815). The ARN needs to assess if their patient is capable of making decisions and evaluating if the patient is able to make their decision that is not being influenced by other known factors or people. Also, the ARN needs to encourage their patients to develop an Advanced Directive to help guide decisions especially when the patient may not alert and oriented.
DeNisco, S. M. (2024). Advanced Practice Nursing: Essential Knowledge for the Profession (5th ed.). Jones and Bartlett Learning.