Beauchamp and Childress discuss moral issues that arise when banking samples for research. They discuss the case of the Havasupai Indians, which is also addressed by Thomas, Waluchow, and Gedge in case 9.1 in Well And Good (290-292). In the case of the Diabetes research conducted with the Havasupai Indians, miscommunication surrounding informed consent created a platform in which morality was clouded. In Well And Good, the authors raise the question of whether “Aboriginal communities have the right to dictate what type of research is performed on their data and materials” (292). I argue that researchers have the obligation to promote autonomy and nonmaleficence when encountering any community of competent individuals. Informed consent, however, cannot be gained without sufficient understanding. All participants involved in research should be informed of the extent to which their biological samples will be utilized. In cases such as this, if ambiguity exists concerning the understanding of the participants and their level of informed consent, researchers may be prompted to ask participants to verbally restate the study’s aims.
The case of the Havasupai Indians is not a matter of deception or intentional nondisclosure in order to gain information that would otherwise be biased. This is an example of exploitation of a group of individuals who are unable to fully grasp what they were consenting to, as a result of a language barrier and lack of definitive study parameters. The researchers neglected to fully inform the Havasupai Indians of the study’s intentions. Deception was not employed, but that does not negate the fact that understanding and clarity is fundamental in promoting morally justifiable research. If the consent form had been more specific, the participants in the study, as supported by their outcry against the study, would have objected to their samples being utilized to such an extent. This notion, however, does not morally justify using the samples for further study outside of Diabetes research. “Using samples or data to achieve goals other than those initially disclosed to subjects negates even an originally valid consent process and threatens the trust between subjects and investigators” (Beauchamp & Childress, 187). The broadly stated consent form was not explicit to the point where those involved had a clear understanding of what the research would entail. In this instance, the researchers have an obligation to adequately and clearly inform the participants in order to reduce the risk of harm. The Havasupai Indians may not have thought it necessary to pressure the researchers into expounding on what they meant by using the samples to “study the causes of behavioral/medical disorders” if they had no reason to believe the study would encompass research outside of the realm of Diabetes (Beauchamp & Childress, 187).
Beauchamp and Childress articulate that the challenge in banking samples “is both not to cause harm to personal and group interests and not to violate privacy and confidentiality” (186). This case did not avoid harm to personal and group interests and arguably violated privacy and confidentiality. Beauchamp and Childress state that, “The Havasupai viewed some of this research as offensive, insulting, stigmatizing, harmful, and provocative” (187). There was no sign of immediate physical harm as a result of the study, but emotional and psychological harm was clearly evident. The results of the study had cultural, religious, and political implications. The case does not address a breach in confidentiality, but various articles were published about the Havasupai without explicit consent from the tribe members. Not only were the Havasupai emotionally harmed by the findings, the “quasi-religious significance” of the tribe’s history was publicly contradicted, further contributing to the immorality of the situation (Beauchamp & Childress, 188). Taking all aspects of this case into consideration, it is obvious that a lack of understanding was exploited in a vulnerable population and the trust in research was greatly hindered regardless of the researchers’ intention (Beauchamp & Childress, 188).
A recent study conducted by Heerman, White, and Barkin (2015) attempted to increase the strength of a participant’s informed consent through the use of supplemental visual aids and graphics based on “enhanced communication techniques from the low health-literacy and health-communication literature”. While this study dealt with pediatric research, similar tactics could be utilized to promote understanding in vulnerable adult populations.
Works Cited
Beauchamp, T. L., and James F. Childress. Principles of Biomedical Ethics. New York:
Oxford UP, 2009. Print.
Heerman, W. J., White, R. O., & Barkin, S. L. (2015). “Advancing Informed Consent For
Vulnerable Populations”. Pediatrics, 135(3), e562-e564. http://pediatrics.aappublications.org.proxy.library.emory.edu/content/135/3/e562.long
Thomas, J., Waluchow, W., & Gedge, E. Well and Good: A Case Study Approach to Health
Care Ethics. 4th ed. Broadview Press Ltd., 2014. Print.