16 Jun Research Ethics and Informed Consent
Question
Workshop Two – 2.3 Dropbox
Research Paper: Research Ethics and Informed Consent
Introduction and Alignment
Doctor holding contract The principle of autonomy would suggest that an individual can always control what does or does not happen with medical care. The reality is far more complex. The “rules” governing informed consent are driven by the dynamic interactions of patients, providers, payors, public health, political players, and policy and advocacy groups.
The realm of medical research has produced some of the most dramatic advances ever witnessed by humanity. Prevention, treatment, and cures have conquered age-old scourges, extending life and even eliminating some diseases (for example, smallpox) from the face of the earth. Research has also been the source of some of the most horrific abuses in history, ranging from war crimes to experiments performed without the knowledge or consent of the subjects. With each potential advance, new questions arise. Does the benefit outweigh the risk? How do you measure the benefit? Are yesterday’s practices applicable to today’s science? How far do we go in exploration?
This activity investigates patients’ rights, informed consent and autonomy, choosing or denying medical treatment, and participating in medical research.
Upon completion of this assignment, you should be able to:
•Recognize the elements of “informed consent.”
•Describe ethical issues resulting from medical research.
Resources
•Textbook: Intervention and Reflection: Basic Issues in Bioethics
•Article: Henrietta Lacks’ “Immortal’ Cells”
•Video: Book Discussion on The Immortal Life of Henrietta Lacks
Background Information
As science expands the horizons of what is possible, it also pushes the boundaries of what is acceptable. The Tuskegee syphilis experiments (mentioned on page 152 of your textbook) are a clear and well-known example of improper procedure and gross violation of individual rights. Not every circumstance is quite so obvious, however.
This activity examines two milestone events that produced immeasurable benefit for medical science – one a radical effort to save a life and the other a seemingly innocuous action that became the foundation for global cellular research. They reflect changing societal norms, unanticipated secondary effects, and the challenges of knowing what is ethical at the forward edge of innovation.
Instructions
1.In the textbook, Intervention and Reflection: Basic Issues in Bioethics, read Part I: Chapter 2, “Research Ethics and Informed Consent” (pages 137–160).
2.Develop a 1000-1200 word paper, excluding title page and references for either the Boyd Rush or the Henrietta Lack case. Your paper should address the questions for your case:
a.Boyd Rush:
i.Read Part I: Chapter 2: Decision Scenario 1 (pages 209–210), “Boyd Rush: The First Animal–Human Transplant,” in the textbook, Intervention and Reflection: Basic Issues in Bioethics.
ii.Answer the five questions (page 210) posed in this case history based on this workshop’s readings.
iii.In addition, what biblical perspectives apply to this case? Why?
b.Henrietta Lacks:
i.Read the article “Henrietta Lacks’ ‘Immortal’ Cells’” at http://www.smithsonianmag.com/science-nature/henrietta-lacks-immortal-cells-6421299/?no-ist (Note: you are now leaving LearningStudio and visiting an outside website.)
ii.Watch the video “Book Discussion on The Immortal Life of Henrietta Lacks” (34:32) at http://www.c-span.org/video/?292685-7/book-discussion-immortal-life-henrietta-lacks.
iii.Answer these five questions based on this workshop’s Chapter 2 readings:
1.What ethical principles apply to the case you selected?
2.Given the phenomenal advances made possible by the HeLa cell line, do you think that Henrietta’s individual rights should be subordinated to the greater utilitarian benefit or not?
3.At what point should an individual item (for example, a malignant tissue sample) become public domain?
4.Henrietta Lacks’ descendants expressed concern over the use of her genetic information and their privacy. How valid is this concern?
5.What biblical perspectives apply to this case? Why?
3.Research the Internet, the OCLS, and other sources, including the Bible, to support your position for your paper.
4.Use APA format for organization, style, and crediting sources, including: a.12-point, double-spaced Times New Roman font
b.At least four in-text citations
c.Title page and Reference page
d.Properly formatted headings (if applicable)
5.When you have completed your assignment, save a copy for yourself and submit a copy to your instructor using the Dropbox by the end of the workshop
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