Henrietta Lacks Informed Consent Case Study

Part 1: What is Involved in Informed Consent?

Informed consent does not simply mean to have a patient sign a white piece of paper with a list of information prior to any type of medical treatment or procedures. Informed consent requires a lot of education and advocacy for the patient. Although informed consent is provided by a health care provider, it the nurse’s duty to act on the patient’s behalf by protecting patient’s right to autonomy (Cook, 2014). There are four key elements of informed consent for nurses (Judkins-Cohn, 2014). First, nurses must make sure the patient is in the right state of mind to comprehend the activities that will happen. Second, the patient should be educated about all the possible risks and benefits before agreeing

with the consent. Third, nurses should remind the patient that their participation is free willingly and not pressured into doing so. The patient should also retain the right to secede or discontinue the participation if the patient does not feel safe without any form of punishment or penalties. Lastly, it is important to constantly keep the patient engaged, informed, and clarify the patient’s questions (Judkins-Cohn, 2014). The health care provider must disclose all the information at the level where the patient can reasonably understand without withholding any vital information.
After the patient has been fully informed about the whole situation, the possible unexpected outcomes, and read the fine prints in the consent paper, the patient will sign and date his or her signature. When a form is used, a witness, usually a nurse, must be present to verify that the signature is really produced by the patient. If a patient at some point in time demonstrate misunderstanding or has any questions, it will be the nurse’s duty to inform the health care provider to answer the patient’s questions (Cook, 2014).

Part 2: Genomics and Informed Consent
According to the article titled, Informed Consent for Genomics Research, published by the National Human Genome Research Institution (NHGRI), the article stated, “not all research that involves human samples or data requires informed consent…in some cases the requirement for informed consent for research using samples of data from human subjects may be waived” (NHGRI, 2016). Every individual deserves the right to know what his or her samples are used for. While acquiring informed consent, patients are entitled to the full details on what will happen and what will possibly happen throughout the whole process. In the case of Henrietta Lacks’ cell (HeLa), her cells have been reproduced so many times that it was used in many laboratories all around the world without her consent.
Henrietta Lacks did sign an “Operation Permit” which stated, “I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under an anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: _____” (Skloot, 2010, p.

31). However, this permit only allowed the doctors to perform surgery for her cervical cancer, but there was never any request to harvest her cells for research and huge profits. By signing an informed consent form, patients are entitled to full disclosure and comprehension of all information. In Henrietta Lacks’ case, this was a breach of informed consent because her cervical cancer cells were used for other research purposes without her consent. Even her family members did not know what was happening at that time. Henrietta Lacks died in 1951. It wasn’t until 1973 that her family learned about the widely-used HeLa cells (Wagner, 2013). She deserved to be respected by keeping her informed and provide her the opportunity to choose what can be done and what can’t be done with the cells while she was

alive.
However, because Henrietta Lacks is no longer alive, the requirement for informed consent to use the HeLa cells for research may be waived. The consent of Henrietta Lacks or her family members should no longer be necessary because Henrietta Lacks is no longer alive and the HeLa cells belong to Henrietta Lacks and not her family members. However, informed consent should’ve been mandatory during the time when Henrietta Lacks was still alive. She deserved the right to know the miracles that her HeLa cells are providing all around the world.
Part 3: How Can Nurses Improve Informed Consent?
In today’s profession of nursing, the nursing role and scope of practice have expanded into many fields of specialties and contribute to essential roles in various parts of the health care system.

Many nurses are or will be involved in research practice either as a clinician delivering experimental procedures and/or medications or as part of a research team. As mentioned in Cook’s (2014) article, “nurses are ethically bound to ensure patients have access to thorough and understandable information, and environment free of power structures that would inhibit an autonomous decision, and the resources necessary to remedy any identified knowledge deficits” (Cook, p. 2014). However, there can be many challenges in acquiring proper informed consent. Misunderstanding of informed consent can be affected by language barriers, religious influences, false expectations, individual

disabilities.
Nurses can improve informed consent by first addressing the language barriers that could exist between the patient and the researcher. The chance misunderstanding will decrease if we provide appropriately translated documents and translators to explain what the informed consent is about. Nurses should also be aware of their patient’s religious influences to see if there are any restrictions or beliefs that go against their religion. Nurses can help lessen false expectations by ensuring that all the information about the possible outcomes, benefits, and risks are clearly explained through the patient’s preferred type of language. Most importantly, requesting the patient to restate his or her understanding of the informed consent will allow the nurse to assess the patient’s understanding and provide more explanation if needed.
Patients are entitled to their rights of informed consent. However, the nurse’s role with the patient and family during informed consents can have exceptions. For example, during an emergency when an unconscious patient is transferred to the emergency room, the time-sensitive, life-saving option would be to operate on this patient before consent can be obtained either from the patient or his or her closest family members.