Chapter 10 Case Study

CASE STUDY: Case Study and Application of Reflective Questions and the Five Justificatory Conditions

The Chehokia Tribe

You were recently hired as the director of public health nursing for the Port Chehokia Health Clinic (PCHC), a modern multiuse clinic that specializes in preventive, primary and acute care, which is the only healthcare facility in the remote town. The first thing you notice upon your arrival at PCHC is the huge totem pole that greets visitors outside. Rough in places and in others rubbed smooth by scores of hands, the totem pole stands in stark contrast to the modern, sterile faade of the clinic.

Located in the remote northwest region of the Olympic peninsula in Washington State, Port Chehokia is a small, seaside, close-knit community that also serves as the tribal home of the Chehokia Nation. For generations, the same families have cared for each other communally, going back even earlier than the French fur traders who gave them their Christian names. Port Chehokia, which long ago was a vibrant fishing village for the once numerous tribe, today has less than 1,000 people, most of them members of the Chehokia Nation. The community has become financially dependent on the ocean-freight Keystone company. Keystone itself has fallen on hard times since being purchased by the international conglomerate, DCI. There has even been talk of DCI closing some of its smaller port operations altogether, and rumors are that Port Chehokia is among those being considered for closure.

PCHC is part of the Indian Health Service, which receives partial funding from the U.S. government. However, because of federal assistance cuts and the poor economic health of the region, the towns economy relies on direct and indirect funding from Keystone and DCI. Keystone employs much of the town, and about 300 of its employees are Chehokia tribespeople. Through community outreach and philanthropy, Keystone supports much of the towns infrastructure, education, and PCHC. In return, Keystone enjoys generous tax incentives and legal leniency by the local government.

Port Chehokia is geographically isolated in its beautiful and rural location. The community has high rates of Huntingtons disease (HD). Its growing incidence is straining resources and affecting the communitys ability to collectively care for each other. HD, a genetic disorder that appears without warning between the ages of 30 and 60, causes irreversible mental and motor deterioration and invariably leads to death after several years of anxiety and suffering for both patient and family. There is currently no known treatment or cure for this Mendelian dominant disorder. Everyone who has inherited the gene will develop the disease and also transmit it to approximately half of their children. People who have this disease require extensive ongoing nursing care, which in this location is primarily provided by family and other community members.

Although at this time it does not provide a cure, genetic testing for the disease recently became available. However, the cost is not covered by most insurers, and PCHC does not have the capacity to do these tests. In addition to HD, the communitys other major health issue is its high burden of type 2 diabetes, fueled by inequities in social determinants of health.

In an effort to help your clinics staff learn how to better diagnose, assist, and counsel those affected by the disease, you attend an HD research conference in Seattle. While there, you meet an HD genetic researcher who describes the importance of compiling a genetic database of HD carriers and sufferers in order to better understand the disease. Data from a cluster of HD represents the best hope for a future cure, though the chance of finding such a cure remains remote. The biotech-funded researcher plans to conduct such a study as soon as he finds an HD cluster. This study will provide free genetic testing to research subjects and a consultation with a genetic counselor. Excited, you tell the researcher that you have access to just this kind of cluster back home.

The genetic researcher arrives in Port Chehokia with a proposal approved by an institutional review board (IRB). He plans to call for volunteers from the clinics patients and deploy a small army of outside recruiters and study personnel in your community. The research forms he provides mention that the study is funded by Helix, a wholly owned subsidiary of DCI, the international conglomerate that owns Keystone. Although at first you were excited about the potential of an HD research study in Port Chehokia, you begin to worry that community members might resist participating in a trial that risks publicly portraying them in a negative light and may have little tangible benefit for participants. You are also concerned that the clinic, the port, and the biotech firm conducting the research are all owned or funded by the same parent company. You express your misgivings to the researcher.

To allay your fears, the researcher offers to include other disorders in the study. This way, HD will not seem as prominent on the informed consent documents. In any case, argues the researcher, the genetic information will be de-identified and securely locked in a file cabinet at the clinic. However, you realize that the data will also be on several researcher laptops and the Helix computer server, which is owned and operated by DCI. The genetic database will be kept in the same electronic medical record system that contains the PCHC patient and employee records and billing. The researcher claims that no one but the subjects, if they request it, will be made aware of their HD status, along with information on the probability of transmitting it to their offspring.

The IRB required the researcher to obtain community consent for the study, so they scheduled a town hall meeting to discuss the research and obtain the communitys consent. Elders from the tribal council have requested that you recommend what the community should do in this case.

Note: The people, communities, and institutions portrayed in this case study are entirely fictional. Any resemblance to existing entities is unintentional.

Break up into small teams and carry out the following activity. Once you have completed the activity, return and report out to the entire class.

Write a recommendation that addresses the following question: To what extent can the proposed study be justified by the five criteria for public health action? A deficiency in any of the criteria, while not necessarily fatal for the contemplated public health action, imposes a moral duty to ensure that a strong justification remains or that the intervention be revised to address the deficiency. See below for hints on applying the criteria to cases.

Applying the Five Criteria for Public Health Action to the Case Study

The following are hints for applying the five criteria for public health action to the Chehokia Tribe case study:

Necessity: Is the proposed action necessary to achieve our health goal(s)? Have the most important health goals been appropriately identified? In this case, the public health nurse is motivated to bring the HD genetic database research to Port Chehokia for various reasons. What are these, and do they exemplify appropriate health goals? How necessary would you say the research study is to achieve these goals? Is a better understanding of HD an important or the most important health goal for this community at this time?

Effectiveness: To what degree do you think the research study will meet the health goals of the community? If there is virtual certainty that the study will achieve the goal, the research can be considered highly effective. If achieving the health goal is speculative at best, then the study is of low effectiveness.

Proportionality: Are the potential foreseeable harms caused by this study clearly outweighed by the expected benefits? If so, then the studys proportionality is favorable. When more harms are likely to accrue than benefits, a public health intervention is considered to bear disproportionate risk. What are the benefits to the community of participating in this study? What weight should you give to harms such as community stigmatization, risks to individual employment and insurance status, and the burden of knowledge that one has the disease but has no recourse?

Least Infringement: Are there alternatives that would achieve comparable results but better protect the target populations rights and preferences? Do you have concerns about the way the study is structured, related to informed consent and collection and storage of data?

Public Justification: Has there been public transparency and involvement from the community throughout planning and implementation? Can a narrative be constructed that makes sense of this intervention for this community at this time? Do you think the community has been or will be adequately involved in this process? What additional information do you think the community needs to decide whether or not to participate in this study? What metaphors or symbolic elements from the communitys history might be invoked to make sense of their participation.

TEXTBOOK: Tuglio-Londrigan, M. & Lewenson, S. (2018). Public Health Nursing: Practicing Population-Based Care, 3rd ed.). Burlington, MA: Jones & Bartlett