Consent, privacy and confidentiality

What is meant that a person must give "informed consent" before they can participate in research? What's the big deal? This is actually a fundamental issue of ethical research. It means that subjects understand the implications of their decision to be in the research study, and that they agree to participate. As an extreme example, consider a person who is asked to be in a study of a new drug. Many side effects are not known, but similar drugs are known to cause permanent problems such as tremors and blindness. The subjects considering such participation must understand all implications of being in the study. Okay, I can hear you saying, but my little study can’t cause permanent harm! How do you know? Let's say you are asking people about their childhood memories, how do you know you won't trigger something about child abuse they had forgotten? There are always potential effects of being in a study, you want people to carefully consider their participation. 

What happens if you want to do research with people who are not competent to give informed consent, e.g., someone with dementia? Such individuals require additional protections, one possibility is the use of "substituted judgment" which means that someone else (e.g., next of kin, facility director) makes the decision based on what they believe the person would want to do in the given situation. 

Privacy was defined by the Belmont Report (1994) as "having control over the extent, timing, and circumstances of sharing oneself (physically, behaviorally, or intellectually) with others" (Chapter 3). So this relates to how the information is collected from individuals, who may be present, and where it is done. On the other hand, confidentially "pertains to the treatment of information that an individual has disclosed in a relationship of trust and with the expectation that it will not be divulged to others in ways that are inconsistent to the understanding of the original disclosure without permission" (Chapter 3). Therefore, confidentiality is related to what you do with the information after it is collected. Why is his important? Consider if you are asking about drug or alcohol use and the subject can be identified by their employer. It may be grounds for dismissal. Or if it is a prisoner, the information may result in a longer incarceration. Even a simple psychological survey, if a name was attached may result in embarrassment and feeling of stigmatization. It is a relationship of trust to be a researcher, you must protect your subjects.  

Next time I will examine the right of subjects to withdraw from studies. Do you have an issue or a question that you would like me to discuss in a future post? Would you like to be a guest writer? Send me your ideas! leann.stadtlander@waldenu.edu