Informed consent and disclosure are two very important aspects of conversation in bioethics. Beauchamp and Childress discuss how informed consent has been put in place to “protect autonomous choice, to avoid manipulation, and to respect persons’ rights” ( Beauchamp and Childress, 121). With informed consent, patients and subjects must authorize and gave permission to researchers and physicians for a specific task, whether for research or a medical procedure. In order for patients and subjects to consent, they must be competent enough to understand the information and be in the right frame of mind to make a decision. Along with informed consent is disclosure. Beauchamp and Childress explain the obligation of researchers and physicians to disclose necessary information to their patients and subjects. Patients and subjects have every right to know all the information that pertains to them, especially when the outcomes may negatively impact them. Informed consent and disclosure are essential in research. Researchers must provide subjects with every single detail of the research. Taking that statement into consideration, consider the following the case. Dr. Richard Ward is a researcher who wanted to conduct research on the Nuu chah nulth, an aboriginal group suffering from arthritis. He approached the council and asked to perform an experiment to help understand the genetics behind arthritis. The council gave him permission. Dr. Ward goes on to collect blood from the people and begins his research. Dr. Ward failed to disclose information about another research he is conducting on the history of First Nations by looking at their DNA. The blood samples show no genetic link to arthritis, so he continues with his other research. Dr. Ward does not share any of this information with the Nuu chah nulth. Dr. Ward shared the blood samples of the aboriginal people with other researchers, and published a paper on the results of his second research, creating unwanted attention to the Nuu chah nulth community. (Thomas et al., 289). This case raises many issues in terms of informed consent and disclosure.
The first issue is that Dr. Ward intentionally withheld information from the council and from the subjects. He intentionally did not speak to the council about his second research and failed to report that he found no link to arthritis. His choice violates the basis of informed consent. Dr. Ward manipulated and abused the rights of the people. The fact that Dr. Ward chose not to disclose information about his other research brings into question about whether he truly wanted to conduct research to understand the genetics of arthritis or if it was a cover up for his second research.
In addition, Dr. Ward’s failure to disclose information violates the trust of the subjects and the council. Research is a field that requires trust, considering it demands interacting with strangers. Subjects trust that the researchers are being honest about what they are doing and that the research is in their best interest. The council and the people trusted that Dr. Ward was going to discover important information about the disease that was hurting them and find ways to treat the disease. They trusted this man, this stranger, with sensitive information about their community in hope that he would provide answers, but that was not the case.
Informed consent and disclosure must play a role in patient/subject-physician/researchers relationships to ensure that patients and subjects are protected.
Works Cited:
Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics. 7th ed. New York: Oxford UP, 2009. Print.
Thomas, J. E., Waluchow, W. J., & Gedge, E. (2014). Well and good: a case study approach to health care ethics (4th ed.). Peterborough, Ontario: Broadview Press.
Generally, I see a concerns with determining whether or not someone can give informed consent because of the subtle manipulations in the way information is presented. Framing effects, along with other methods of portraying information in a biased manner, can lead people to conclusions that are essentially predetermined by those asking the question. While it is an ethical duty of physicians to be objective and fair with both the information and the manner in which it is presented, this case appears to be a straightforward example of withholding information from the patient group being researched.
This lets us discuss the main issues of informed consent, rather than finding nuances that have smaller impact. One important mistake is the seeming lack of oversight involved with the research. An Institutional Review Board (IRB) that can work with researchers to make sure information is being obtained and disseminated ethically, with the agreement of the patients, is a necessity and should be implemented in any future research in this field. Compared to past failures in the ethics of medical research — like the Tuskeegee syphilis experiments — this case is not as extreme in regard to the harm done to patients. It is, however, a clear violation of trust and consent on the part of the Nuu-chah-nulth people and an example of why IRB oversight isn’t just burdensome regulation, but an important step in the research process. Unfortunately, it appears as if this turned out only to be a case regarding the proper collection of data, as the samples were ultimately destroyed without meaningful results (Steel). If the Council could find a way to work with IRBs and inform the population about improvements to the research process, perhaps future research will be possible with this demographic.
Source
Debora Steel. Blood taken for research destroyed, accessed 1 March 2017, http://www.hashilthsa.com/archive/news/2013-07-22/blood-taken-research-destroyed
Hi Sandra,
This case brings up a lot of important issues, and Dr. Ward did almost everything wrong. The obvious point that you brought up is that he violated the principle of informed consent and completely ignored the council’s needs. However, when I read this case, I find a much more troubling issue, and that is the issue of confidentiality for the council. Not only did Dr. Ward publish the data he collected from the council, but he shared the intimate details of the tests with other researchers who had not been in contact with the council. As Grant mentioned in his comment, the Institutional Review Board would have been vital here. No reasonable research review board would have allowed these breaches of confidentiality. This case highlights the need for research oversight. Dr. Ward and his time violated the rights of the council in many ways, and in my opinion, more justice than an apology is necessary.