14 February 2011

Ethics

My university has an institutional review board, the IRB, which reviews and monitors faculty, staff, or student research "to assure that research with human subjects is conducted in accordance with federal regulations and basic ethical principles."  I just completed a tutorial that helped me to understand basic principles of IRB review, and I discovered some important considerations for my project.
A subject's participation in research must be completely voluntary.  Great care should be taken by investigators to avoid even the appearance of coercion or undue influence when recruiting potential study subjects.
Since one of the methods I hope to use is a survey distributed to various classes in the school, I will have to make it very clear to students and teachers that the students are not required to participate in the survey.  Would the best procedure be to give every student a survey after informing them that they can choose not to answer the questions, or would it be better for students to choose to take and complete a survey?  With the first method more students would complete it because they wouldn't feel at all self-conscious about walking to the front of the class in the middle of a lesson, but the second may be more in line with IRB protocol. 
The main problem, of course, with having children as the majority of the population I am studying is that I must have informed consent from every participant.  Fortunately, I am in contact with employees from the head office who will help me to best negotiate the parental and student consent.  IRB recommends that I "write at a sixth-grade reading level; use simple, straightforward sentences; use commonly recognizable terms and measurement amounts; avoid the use of jargon or technical language; and explain terms that may not be easily understood."  Since I am not sure how well the students will understand English, I may need a translator to write my survey in Tibetan, but I should also back-translate to make sure that it really means what I want it to.

One of my coworkers told me that a child he was interviewing in South Africa became upset and began to cry, probably because she was confused.  I need to ask the child, not just the administrators and parents, for permission to interview, and then make it clear what I am doing.  I will need to make sure that there is another adult they know with me during the interview and remember that I am speaking to a child--I shouldn't talk to a child like I speak to my peers.  Before I go I will interview my younger siblings, aged six to 17, with my prepared questions and practice adjusting them for the age.  Perhaps I should even develop separate sets of interview questions for older and younger students.  If my younger siblings, native English speakers, struggle with the questions, or if the questions do not yield the information that I want, then I will need to revise them.

Another problem I have is with privacy and confidentiality.  This blog is public, so anyone in the world can read it.  I should not, therefore, post identifiers online, nor should I share sensitive information.  What I should and should not share on my blog is a topic for further consideration.  Have I given too much information by posting entire Skype conversations and email interviews?  Where do I draw the line between what is acceptable to post and what is not?

The last section to note is about adverse events.
An adverse event is an event that occurs during the course of the research protocol that causes or increases the risk of physical or psychological harm to the participant, or results in a loss of privacy and/or confidentiality to the research participant or others.  Significant adverse events [include] ; a serious breach of confidentiality or privacy of research subjects or others by the researcher or focus group members that results in or could result in, e.g., deportation, arrest, expulsion, suspension, loss of job, loss of family support, etc.
This is an especially important topic with the precarious political situation in India, Pakistan, Tibet and China.  I do not want my blog or any other aspect of my research to result in these adverse events.  Because my project was reviewed and accepted by ORCA, I think I will be able to avoid these dangerous situations, but it is crucial as I continue to develop this blog and the other elements of my project that I draw the line of acceptable blogging and then avoid it at all costs.   

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