In the case of the Nuu chah nulth Nation and Arthritis Research (case 9.1), the primary dilemma revolves around the use of blood samples for other, unspecified research. Dr. Richard Ward came to the Nuu chah nulth Council to receive permission to take blood samples in hopes to “ discover a genetic predisposition to [rheumatoid arthritis] and … help in the search for a cure or at least direct people testing positive to physiotherapy” (W & G 289). His results for discovering a link to arthritis were lacking; however, he was able to publish a groundbreaking paper on the genetic distinctiveness of the Nuu chah nulth Nation. During Dr. Richard’s rise to fame, he neglected his original agreement with the Nuu chah nulth Nation and has let the blood sample circulate through the research community.
The issue at hand is the vagueness of the consent that the Nuu chah nulth Nation signed. Due to this vagueness, the Nation was exploited for their genetic information, receiving neither the promised information nor help regarding Arthritis in their community. Although Dr. Richard Ward forgot to contact the tribe after a year, he technically fell within the constraints of his proposed research –“to conduct a Health Canada sponsored study” (W & G 289). A small loop hole, due to the vagueness in the description of his study, allowed him to branch away from solely doing Arthritis Research. This action should not condone but it prevented; however, I argue that the blame falls on both sides. The consent should have been more specific, and at the time there should not be blind trust in the researcher. This act of blind trust is still prevalent in research today. This became painfully obvious after looking at my own research.
Doing research myself, I never put much thought into the mandatory consent form given out at the beginning of each experiment. For the most part, it is routine and a box on my checklist to ensure the lab does not get sued. I never realized it was also to protect the rights of the subject and the data collected from them. The most frightening part is the fact that most participants in my research do not read the consent but rather agree to my verbal synopsis of it. There is a blind trust towards scientists. People assume the best from them and offer little hesitation when agreeing to someone in a “white lab coat”, especially when the incentive is high.
My final thought after reading this paper is the iconic line from the Hippocratic Oath: “to abstain from doing harm”. I agree that Dr. Richard Ward preformed unsanctioned experiments due to vagueness; however, would the reaction from the Nuu chah nulth Nation be different if the research helped them instead of hindering them? I find it interesting that the reaction of the tribe would have probably been different if Dr. Richard Ward found something prevalent to the Nation’s health, but also unrelated to Arthritis. If no harm were done to the Nuu chah nulth Nation, would there be such large backlash towards the additional experiments?
Citations
Thomas, John E., Wilfrid J. Waluchow, and Elisabeth Gedge. “Case 9.1 The Nuu chah nulth Nation and Arthritis Research” Well and Good: A Case Study Approach to Health Care Ethics. 4th ed. Peterborough, Ontario: Broadview, 2014. 289-192. Print.
Waterson, Bill. “Calivn and Hobbes”, http://1.bp.blogspot.com/-Cmn9aQ8ZpPE/U3fKHC9-3uI/AAAAAAAAGlU/v0jCsff3dEQ/s1600/Research.jpg.
Alex,
I think you make a very good argument in your post, especially when you bring into light your own research experiences. It is important to note, as you said, that technically Dr. Ward did what he said he was going to do which was “to conduct a Health Canada sponsored study”. He even did attempt to run the arthritis study but to no avail. Legally, Dr. Ward did not break any laws because he found a loop hole and was able to complete other research to lead himself to success that way.
What is very interesting that you pointed out was that the vagueness of consent is/can be a huge problem in medical research. Most people chose not to read consent forms and even if they did there’s a high chance that they would not completely understand what it all means, so the vast majority of subjects trust whoever is asking them to sign the form and rarely ask questions about the legality of everything. This is a pretty scary thought, as nine times out of ten, the subject has no idea who the research even is. It would be incredibly easy for a researcher to make a consent form so vague that he/she could essentially do anything they wanted with the subject’s samples and still have it be legal.
In this case in particular, while I do not agree at all with what Dr. Ward did as it was morally wrong. Legally, he did have informed consent from all his subjects. Similar to the case where we studied a cancer cell human study- where the patients were unknowingly injected with essentially harmless cancer cells, there is technically nothing illegal going on. Much of the ethical justification in both of these cases is that despite the deception of the human research subjects, the information that is being found out from these studies is for the greater good of the people. Basically, these researchers are helping hundreds of thousands of people by simply tricking a handful into research they technically signed up for but didn’t entirely know about.
Works Cited:
Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York, NY: Oxford UP, 2001. Print.
Thomas, John E, et al. “Case 9.1: The Nuu chah nulth Nation and Arthritis Research.” Well and Good: Case Studies in Biomedical Ethics, Broadview P, 2014.
Alex,
I enjoyed your post on arthritis research and the problem of vagueness and blind trust. I think sadly this trust in the research community then followed by someone being taken advantage of happens frequently. While it really is a shame that the agreement the Nuu chah nulth Nation thought they were entering wasn’t honored, I agree with you that the blame falls on both sides. Dr. Richard Ward should not have exploited the contract as well as shared the blood samples through the research community and the Nuu chah nulth Nation should have been aware of the vagueness in the description of the study as well as not have blindly trusted someone they didn’t know.
I think many research participants do not entirely read consent forms or have the inclination that their biological material is going to be exploited. In this case the Nuu chah nulth Nation believed that Dr. Ward could help them find a genetic predisposition to rheumatoid arthritis. The excitement over this possibility made the nation jump at the offer. I think the Nuu chah nulth nation should have been more vigilant in accepting this offer. They should have read all the small print and made sure to specify what it is that they were ok or not ok with. Also since they are not scientists they are not fully aware to the research process and were therefore naïve to the ways in which they may be exploited.
While Dr. Ward was technically not breaching the contract by finding the loophole, he did break the moral contract with the nation. In his rise to fame, he allowed the samples to circulate around the community as well as use the samples for research outside of arthritis. This was a very exploitative act that was used for Dr. Ward’s gain. He used the trustfulness of the Nuu chah nulth Nation to his advantage.
Overall I agree with your argument that both sides are at fault. I also find it interesting at the end of your post where you comment on whether the Nation would have been upset if Dr. Ward had found something beneficial through other research. It’s an intriguing thought and makes one whether the backlash was from being exploitive or not getting the answers they wanted.
Works Cited:
Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. New York, NY: Oxford UP, 2001. Print.
Thomas, John E, et al. “Case 6.4: Sue Rodriguez Please Help Me to Die.” Well and Good: Case Studies in Biomedical Ethics, Broadview P, 1987.
Hi Alex!
I really enjoyed your post. I too am involved in research on campus and I would have to say that a vast majority of the time, the participants that come in look at the consent form for no more than 10 seconds before they sign it and move on. In fact, our consent forms for the most recent study had the duration of the study listed as twice as long as was listed online (typo) and only one participant asked what the correct length of the study was. Although our research is nowhere near as invasive as collecting blood samples to examine genetic predispositions, it is still scary to think about how many subjects just completely disregard the consent form.
You bring up an interesting point with regards to how they would have reacted if Dr. Ward had discovered useful information for their health that was not directly related to arthritis. As we discussed in class today with the case of the Havasupai, I think that the nature of the finding absolutely affects the way the people being studied respond. In the case of the Havasupai, the research conducted (without their knowledge) not only embarrassed them but also countered their personal beliefs about where they came from (Thomas, Waluchow, Gedge 290). If the researchers had found information that confirmed their oral history or was beneficial to their health, the Havasupai people probably would have been grateful for the finding. However, regardless of whether or not there was backlash from the group being studied, the researchers still did not have the right morally to conduct such additional research, even if they were within their rights legally.
While conducting this kind of research, a more explicit consent form should be required in order to protect the subjects from being taken advantage of. Researchers should not be allowed to exploit their subjects, and the actions of Dr. Ward and the researchers studying the Havasupai did just that. What is also unfortunate is that Dr. Ward moved up in the ranks and received a lot of press for his findings, providing a reward for an unjust action. This reward presents the image that it is okay to exploit your subjects as long as your findings are a worthwhile contribution to society. While the findings may have been important, and they cannot be taken back, I feel as if there should be some consequence to Dr. Ward and researchers who take advantage of their subjects by providing vague consent forms. What do you think? Should Dr. Ward have faced further consequences other than simply having to return the blood samples?
Citations:
Thomas, John E., Wilfrid J. Waluchow, and Elisabeth Gedge. Well And Good: A Case Study Approach to Health Care Ethics. N.p.: Broadview, 2014. Print