Read the three articles that provide examples of occasions where unethical research happened or may happen. In your initial post identify commonalities in the unethical practices or attitudes of each of the articles if any. What ethical principles were violated? What are the lessons to be learned from these examples? What guidance, practices or policies would you use to avoid these errors in the future. How would a Christian worldview and Biblical principles apply?
Support with Scripture.For each thread, you must support your assertions with at least 2 scholarly citations in APA format. Each thread should include integration of Biblical Worldview with supporting scripture. Each reply must incorporate at least 1 scholarly citation in APA format. Each reply should include integration of Biblical Worldview with supporting scripture. Any sources cited must have been published within the last five years. Acceptable sources include the textbook, the Bible, peer-reviewed journal articles.
Imagine that you donated a bit of blood to a researcher whom you believed intended to identify a genetic link to a disease ravaging your community, only to discover years later not only that you had been misled, but that other researchers were mining your DNA for reasons that were never disclosed to you. What would you do? This was the case for the Havasupai Tribe in Arizona, who learned that researchers at Arizona State University (ASU) had gathered blood samples from them to search for a link to diabetes but used the samples to look for other diseases and genetic markers, thereby violating the basic tenets of human subject research. To determine where the breakdown between the Havasupai Tribe and ASU occurred, let’s look at community-based participatory research and its underlying principles of informed consent.
The Agency for Healthcare Research and Quality (AHRQ) defines community-based participatory research (CBPR) as a “collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and well-being through taking action, including social change” . CBPR, as AHRQ describes it, further entails shared decision-making power and mutual ownership between the community and the researchers. Over time, researchers have come to recognize that, with community commitment, they could work effectively to assist in identifying and resolving health care disparities.
Topics for community studies have ranged from asthma in urban populations to genetic propensities to develop various types of cancer. Well-known CBPR studies include those that helped identify the BRCA1 gene prevalence in the Ashkenazi Jewish population and the sickle cell trait among African Americans. Certain fundamental principles apply in conducting CBPR, regardless of the group in question. It is vital that a researcher respect the community and its values and beliefs and follow the principles of human subject research, namely, obtaining informed consent from the community. Not only can failure to adhere to informed consent protocols be devastating to a community, it can permanently damage the credibility of a researcher or institution.
Consent Informed consent has been a point of debate and concern since its origin in the postWorld War II Nuremburg Code, which is a set of guidelines drafted to ensure that harms to humanity like those in Nazi “medical” experiments would never occur again in the name of science . Informed consent is achieved when a competent individual agrees to participate in a study or procedure after having expressed clear understanding of all material facts related to the activity in question. These facts are provided by the researchers and empower the individual to make an informed choice, in full recognition of the nature and consequences of the decision. The Tuskegee Syphilis Study, which began in 1932, involved approximately 400 African American men infected with syphilis.
The U.S. Public Health Service tracked these men for roughly 40 years without providing them with a diagnosis of their disease or any opportunity for treatment . This was a direct violation of informed consent principles and the antithesis of how CBPR should be performed. As a result of their lack of treatment and lack of knowledge, hundreds of the men and their families lost their lives to a treatable disease.
CBPR Experience In 1989, members of the small tribe of approximately 650 poverty-stricken people approached ASU anthropology professor John Martin, with whom the tribe had a preexisting and trusting relationship , seeking to learn why the incidence of diabetes within their community was increasing. Genetic links to diabetes had been identified in another tribe, and, if a similar gene could be located among the Havasupai, it might provide a tool for addressing risk factors. Professor Martin approached a colleague, Therese Markow, a geneticist at ASU, to assist in the study. Dr. Markow’s previous work had touched upon other diseases, specifically schizophrenia, and she wished to expand the study to include mental disorders . Professor Martin is said to have responded that he did not believe there would be interest in Dr. Markow’s research on the part of the tribe, but Dr. Markow continued with her mental disorder research based on the samples provided by the tribe