BIOET 533
Ethical Dimensions of Renewable Energy and Sustainability Systems

2.1 Treatment of Subjects (Research and Treatment)

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2.1 Treatment of Subjects (Research and Treatment)

Each research institution which is able to receive grants from the U.S. Government for human and/or animal research is required to have an Institutional Review Board (IRB) that reviews proposals to assure the protection of research subjects. Examples of and reasons for requiring review of research that involves human subjects are numerous and multiple throughout medical and behavioral research. (History is full of horror stories about the treatment of medical and behavioral research subjects.)

While it may not be bio-medical research, if we are to learn what we can about the many social and behavioral aspects of renewable energy and sustainability systems, we will need to research topics such as patterns of consumption, energy use, patterns of traffic flow, individual psychology, response to risks, etc. Behavioral and social requires the study of research subjects, which will require a review of the research by the institution's own IRB.

Penn State has very extensive Institutional Review Board (IRB) resources as part of the Office for Research Protections (which all research falls under.) This lesson is in no way a replacement for the extensive educational resources and regulatory support. See the following resources for more: Penn State's Institutional Review Board and Penn State's Office for Research Protections.

The treatment of research subjects and medical patients can be approached through a basic principle (easy in theory, but not in practice) that subjects ought to be treated how they want to be treated. The difficult part can be in determining whether subjects understand the risks of the procedure or research in which they are partaking. Further, protecting the identity of information and research data about a subject is required (privacy and confidentiality) if no harm comes to the subject from the information generated by the research (such as a pre-existing condition or genetic marker for a specific disease). Subjects that are experiencing conditions that could compromise or coerce subjects into agreeing to research or treatments that may not be in their best interests.

Significant Principles

  • IRB Guiding Principles:
    • Respect for Persons (dignity, autonomy, respect for persons)
    • Beneficence (protecting participants from harm through evaluation of risks)
    • Justice (fair selection of research subjects, representation of subjects)
  • Consent: Can a person give properly informed consent ("of sound mind and body") in agreeing to a procedure, for participation in research, or in accepting most any sort of decision that could affect their health or well-being?
  • Privacy: Is a person and/or their participation anonymous and free from observation from outside parties?
  • Confidentiality: Is data from the research restricted from access and correlation to specifically identifiable individuals?
  • Deception: Is the subject put at risk in research that is intentionally misleading, (such as completing a task where something is being observed other than what was revealed when the subject began the research)?
  • Therapeutic misconception: Is the research subject overly optimistic or hopeful (such as in a very early drug trial for a fatal disease), particularly in ways that can take advantage of that enthusiasm?
  • Ensuring safety and needs of vulnerable research populations: Is the research subject someone that could be exploited or taken advantage of due to their condition or circumstances (juveniles, prisoners, mentally impaired, etc.)?

Discussion Questions

  1. How do you approach becoming informed about a particular health care procedure? Think of something simple, like getting a flu shot.
  2. Do you read all of the information provided to you when you are giving consent?
  3. What are some reasons you can think of as to why research data about a person would want to be kept anonymous?
  4. How would you weigh what is in your best interest if you were faced with choosing between a risky procedure versus having a known ailment that could threaten your life?
  5. Should patients always be treated the way they want to be treated (within our medical ability to do so)? Can you think of exceptions?
  6. Would you participate in a research project testing genetics issues?