Moral Dilemma:
In the case “The Nuu chah nulth Nation and Arthritis Research”, Dr. Ward and his research team collected blood samples from the nation of Nuu chah nulth, a group of aboriginal people with the permission of the nation’s Council. The case presents a moral dilemma regarding the way in which Dr. Ward conducted his research. The question is brought up, “Should Dr. Ward and his team apologize for their actions?”
Analysis:
Informed consent in research is important, especially amongst a large group of participants. Dr. Ward received an overall consent for the arthritis testing, but he did not seek consent for anything else. The Council agreed to the research, with the hope that Dr. Ward would discover a genetic predisposition and help search for a cure.
In the case for Dr. Ward and his research team, the nation understood that he was already working on the general area of the evolutionary history of First Nations by studying their DNA. From this, it seems like the individuals were competent, so they could understand the risks of giving blood for research. Also, Dr. Ward continued to run tests on the samples after the first failure of tests. This demonstrates his dedication to the research.
However, Dr. Ward and his research team fell short in disclosing information about the results with the nation. Dr. Ward promise, but failed, to notify them on the progress of his research within the year. After gaining world recognition, he allowed other researchers to use the samples in studies unrelated to arthritis, without the consent of the nation. Although the team returned their samples after outrage among the nation and other researchers, the team has yet to apologize for misusing the blood samples.
This case deals with the major moral principle of nonmalefience: “one ought not to inflict evil or harm”. We can specify this to “not harming or exploiting the research participants’ rights”. In the “Consent of Adult Experimentation” case, we learned about the dangers of medical research from the Nazi experiments. One of the dangers is violating the participants’ rights in research. The community has a right to dictate what type of research is performed on their blood samples and the right to understand the consequences of the type of research. For example, there is a possibility of sharing identifying information through the blood samples. The research team violated the community’s autonomy when they withheld information on the type of research being done with their samples. Overall the research should be based on the consideration of the rights of the patients, like the consideration used in the case of “Research Involving Alzheimer’s Patients. The director of the patients focused on behalf of the patients rather than herself.
Another moral principle is “one ought to do or promote good”. Specifically, one should promote good with righteous intentions. It seems as if Dr. Ward got distracted in the midst of his own research on evolutionary genetics, rather than working on the Arthritis case for the Nuu chah nulth nation. The growing popularity about his work may have facilitated this distraction. He failed to help the nation efficiently and to do right by them to the best of his ability. He also failed to protect the individual privacy and confidentiality of his participants by allowing other researches to use the samples.
It is important to consider the understanding of the nation, in its entirety. Most likely, they lack similar communication system, so the information may be manipulated between the research team and the population. They may also lack the same resources or knowledge to understand all medical and genetic terms of arthritis. An example of this situation is experimentation on prisoners. In his article, Reiter says that unhealthy prisoners are more likely to desperate wanting for any type of medical care. This can lead them to taking desperate measures they may not otherwise take. Like prisoners, the individuals of the nation may have a compromised ability to understand the potential consequences of the research.
Overall, I believe Dr. Ward and his research team should apologize for exploiting the samples of the participants and violating their right to know what research is conducted on their data.
Citations
Broady, Baruch, and Tristram Engelhardt. “Consent of Adults to Experimentation.” (n.d.): n. pag. Web.
Reiter, Keramet. “Experimentation On Prisoners: Persistent Dilemmas In Rights And Regulations.” California Law Review 97.2 (2009): 501-566. Academic Search Complete. Web. 20 Feb. 2017.
Thomas, John E, et al. “Case 3.1: Research Involving Alzheimer’s Patients.” Well and Good: A Case Study Approach to Health Care. 4th ed. Canada: Broadview, 2014. 289-92. Print.
Thomas, John E, et al. “Case 9.1. The Nuu Chah Nulth Nation and Arthritis Research.” Well and Good: A Case Study Approach to Health Care. 4th ed. Canada: Broadview, 2014. 289-92. Print.
Hi Sylvie
I really enjoyed your post and analysis of the situation with Dr. Ward and the Nuu Chah Nulth Nation. I agree that informed consent is a very prominent issue in this conflict of interest. You mentioned the at the individuals of the nation were “competent”, as they were aware of Dr. Ward’s research on First Nation’s DNA. However, I feel like we should still question whether or not there was real awareness amongst the majority of the individuals. I agree that this deals with the major moral principle of non-maleficence. We are used to a physician-patient relationship with non-maleficence, yet violating research patient’s rights are also an alternative form of non-maleficence. There is also a violation of autonomy in this case as well.
I understand where you are coming from with “one ought to do or promote good” within Dr. Ward himself however here are some thoughts to ponder on. Is there a balance between Dr. Ward’s research intentions on the people of the nation versus Dr. Ward’s research intentions on the whole world? Though it seems like Dr. Ward displays greediness in his treatment of the individuals, his intentions seem to be of non-maleficence. Perhaps there is a conflict of interest between what Dr. Ward “envisions” versus what Dr. Ward “should do”. The whole concept of research in itself is for the “big picture” and with that comes sacrifices.
I agree that health literacy is a very large issue, especially in terms of medical research. Many patients are unaware of what they are getting themselves into. However, as science goes, there are also many things that the scientists themselves are unaware of. There is always a risk and a gap between medical knowledge and predicting outcomes. I like how you put the example of prisoners and the idea of being desperate for any type of medical care.
Ultimately I agree with you in that Dr. Ward should apologize for exploiting the participant’s rights within the boundaries of his research.
Thomas, John E, et al. “Case 3.1: Research Involving Alzheimer’s Patients.” Well and Good: A Case Study Approach to Health Care. 4th ed. Canada: Broadview, 2014. 289-92. Print.
Thomas, John E, et al. “Case 9.1. The Nuu Chah Nulth Nation and Arthritis Research.” Well and Good: A Case Study Approach to Health Care. 4th ed. Canada: Broadview, 2014. 289-92. Print.