Perhaps I should back up.
I'm putting together some ideas for this summer. I'd love to travel to Central America to see what I can learn about how to age with grace. I have been interested in this subject ever since I was able to grasp the vast differences between how people in Ukraine age and die versus how people in the United States age and die.
In Ukraine, elders are often taken back in by their children and nursing homes are virtually non-existent.
In Ukraine, elders are given chores and tasks to help support their family, whether chickens to look after or napkins to sew.
In Ukraine, people die at home without extreme or radical (often expensive) attempts to prolong life a few more months.
In Ukraine, people accept death as part of life and are able to talk about it with ease.
Note: all of the above are vast generalizations and not always true in Ukraine, just as the converse is not always true in the United States.
Anyhow, this fascination with the transition from life to death has lead me to pursue funding for a trip to Central America where I will be able to talk with and observe a third culture dealing with aging and dying. My institution will fund such an enriching trip so long as it meets basic requirements, such as being scientifically based and completely ethical. My proposed research will most likely be of narrative qualitative design with data being collected in interviews, photographs and documents. The ethical benchmark is tested by completing an EPRP education program and taking a test at the end.
The Ethical Principles in Research Program requires that I read the Belmont Report. This document was written by a panel of experts in 1976 after the full extent of the Tuskegee Airmen syphilis atrocities had been revealed. It seems to be a whole-hearted attempt at achieving more ethical research by applying the principles of "respect for persons", "beneficence", and "justice". I found their definition of justice to be particularly interesting.
"Almost all commentators allow that distinctions based on experience, age, deprivation, competence, merit and position do sometimes constitute criteria justifying differential treatment for certain purposes. It is necessary, then, to explain in what respects people should be treated equally. There are several widely accepted formulations of just ways to distribute burdens and benefits. Each formulation mentions some relevant property on the basis of which burdens and benefits should be distributed. These formulations are(1) to each person an equal share, (2) to each person according to individual need, (3) to each person according to individual effort, (4) to each person according to societal contribution, and (5) to each person according to merit."
It is good to think with this recently ignored part of my brain about broad philosophical concepts such as justice.
Here's another great quote, apparently one that Ron Paul has not read and thinks is a matter of belief rather than fact.
The Belmont Report goes on to speak to the application of the three comprehensive principles.
Application includes:
1. Informed consent (information, comprehension, voluntariness)
2. Assessment of risks and benefits
3. Selection of subjects.
"Injustice may appear in the selection of subjects, even if individual subjects are selected fairly by investigators and treated fairly in the course of research. Thus injustice arises from social, racial, sexual and cultural biases institutionalized in society. Thus, even if individual researchers are treating their research subjects fairly, and even if IRBs are taking care to assure that subjects are selected fairly within a particular institution, unjust social patterns may nevertheless appear in the overall distribution of the burdens and benefits of research. Although individual institutions or investigators may not be able to resolve a problem that is pervasive in their social setting, they can consider distributive justice in selecting research subjects."
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