Beneficence was defined as “The principle of beneficence entails a moral obligation to help other persons (for example, obligations of health professionals to assist patients) or to provide benefits to others. Beneficence involves both the protection of individual welfare and the promotion of the common welfare.” (Coughlin, 2008) Let us examine the topic of Beneficence in relation to the ethical dilemma below. At this point , I understand that it may be difficult to explain both individual and group dilemmas relating to public health ethics – which is exactly why I chose this case study. There are some clear individual ethical issues and tensions present due to the nature of the scenario and how as public health officials we have to act in the best interest of society as a whole. For this case study, you will need to tie in previous knowledge in public health and ethics related to research. Beneficence is not the only ethical tension in question here, but it is the focus to make sure you are using that lens to guide your best course of action. Public Health Ethics Case Study #1 Beneficence PUBH 3420 Introduction: [Three years ago, Jonathan, aged 23] decided to participate in a largescale biobanking project that was exploring how environment, lifestyle and behaviour contribute to the development of cancer. Very enthusiastic about this project and in solidarity with his mother-in-law who had been diagnosed with breast cancer, Jonathan provided blood and saliva samples to the PreHealth Project based in Winnipeg, Manitoba. At the assessment centre, hosted by the local hospital, Jonathan was asked to do a lifestyle questionnaire and provide authorization for the retrieval of pertinent information from his medical records. The consent form he signed before providing any samples or authorizing the retrieval of any data mentioned that both his data and samples would be stored securely for 50 years and that access would only be provided to researchers partaking in cancer research who had previously obtained the necessary scientific and ethical approval. The PreHealth Project is affiliated with a university in the region and the Research Ethics Board (REB) of that university’s Faculty of Medicine is in charge of approving any access requests. After providing his data and samples, Jonathan decided to leave the country to pursue a graduate degree in France without updating his new address with the PreHealth Project. Case: The Canadian government has recently declared a public health emergency following the propagation of a mutated strain of the Ebola virus. Every province in the country is striving to provide the necessary care to individuals affected by the latest strand of the virus and the same level of intense activity is seen in the research setting. In Manitoba, research has focused mainly on small groups of people considered most at risk of developing serious symptoms related to the new Ebola virus. To prevent future outbreaks, however, many researchers in the province believe it is necessary to undertake a larger study of genetic factors contributing to the development of severe symptoms. Only a study involving thousands of subjects could identify any genetic factors involved in this propagation, but no resource of this size is currently available for research on the new Ebola virus. Moreover, setting up a biobanking project specific to the Ebola virus would require a considerable amount of both time and funds before it could be effective and usable by medical researchers. This insufficiency is prompting several researchers to request access to biological materials and genetic information already stored in various pre-existing population biobanks for use as control groups. The university’s REB has received one such request. After a long debate, its full membership decided to authorize a Canadian researcher to access the data and samples collected by the PreHealth Project. The declared public health emergency led the REB members to decide that Public Health Ethics Case Study #1 Beneficence PUBH 3420 the proposed research is essential and that the infringement to the participants’ consent — that their data and samples only be used for cancer research — was justified in these exceptional circumstances. In normal circumstances, participants would have had to re-consent for such secondary use of their data and samples. On Jonathan’s return to the country, he learned through local media that PreHealth’s data and samples will be used for studies on the mutated strain of the Ebola virus. He felt concerned that his samples would be used for a purpose other than that he was informed of during the consent process. He also feels a bit betrayed by the project he so eagerly participated in on altruistic grounds. Jonathan decides to complain to the Faculty of Medicine of the university in question, and is contemplating legal action for improper use of his data and samples. Questions to guide your thinking: 1. What are the competing ethical issues at play? 2. What are the benefits and/or disadvantages for researchers to use a population biobank established for research on cancer to study genetic aspects of the mutated strain of the Ebola virus? 3. What possible repercussions could this dispute have on future participation in the PreHealth Project? 4. Do you agree with the decision made by the REB? If yes, why? If not, what would you have decided if you were an REB member?
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