[MUSIC] Hi. In this module and the one that follows, I'm going to talk about two of the most important issues that arise with respect to human subjects protection in social sciences research. Consent in this module, and confidentiality in the module that follows. So, when we think about subject protections in social science research, there's three general areas that we focus on. One is consent, which I'll focus on in this module. Have the subjects provided informed consent? Then there is confidentiality. Will we be able to preserve the privacy, the confidentiality, of the information that is given to us by the people that have agreed to participate in our study? I'll talk about that in the next module. And then in the next module, I'll come back and also mention a few other issues that commonly arise in specific types of studies, including how do we handle deception and the prospect of psychological harm? Let's talk about consent. So, the process of ensuring that we have informed consent from a research subject includes many steps. One is that when we contact a potential subject, a prospective subject, we must take care to disclose the risks of the participation in the study. So any protocol that's submitted to an IRB has to explain how the risks of the study will be disclosed to the subjects. It's absolutely unacceptable to conceal potential risks or somehow minimize them. The subjects have to make an informed decision based on the risks that have been described to them. We have to explain the purpose of the study. It's only fair that we respect the participants, and we think about their role as informed people making decisions, that we explain what we are doing, we talk about why we are conducting the study. We need to identify ourselves when we are contacting subjects. It's almost never acceptable to deceive a prospective subject about our own identity or our institutional affiliation. We have to obtain some kind of confirmation from the subject that the participation is indeed voluntary. Sometimes that's written. Sometimes there are exceptions to the requirement for written confirmation. And we have to confirm to the subjects that they understand that they are actually free to withdraw at any time. They can quit whenever they want. So it's not acceptable to somehow tell subjects that say, once they've given consent to participate, they can't later withdraw, they can't quit. Every subject has the right to simply say, I've had enough, I'm done, and leave or walk out halfway through the study. And it's not acceptable to somehow try to pressure them to remain or claim that they've agreed to remain for the remainder of the study. Finally, we have to give the subjects an opportunity to ask questions about the study, and we have to answer those questions truthfully. So typically a plan submitted to an IRB will address how all of these issues will be taken care of when it comes to recruiting prospective subjects. Now, written consent requires some thought. So, almost any you might say typical survey that includes in-person contact with subjects will often, maybe almost always, require some kind of a record of the written consent provided by the subjects. Consent forms that are signed by the subjects in which they indicate their willingness to participate in a study are normally secured and then stored separately from the data itself. Because the consent form normally will not have any information that will be actually used in the analysis. It's simply to document that in fact, the participants gave their written consent to participating in the study in case any questions arise later. Now, things get a little more complicated sometimes. If we're talking about venue based studies or respondent-driven samples in which the subjects are anonymous to begin with. So, for example, if we're going into a particular location, a place where drugs are bought and used, or a place where sex work is common, and we gather our sample that way, obviously most of the subjects will probably prefer to remain anonymous. In that case, oral consent may be an option. Because the existence of a signed consent form with the name of the participant may actually increase their risk. So if you have a situation where the participants are inherently anonymous based on the way in which they were contacted, because they're located at a particular venue, then having a document that actually names them, even if it's secured in a locked file cabinet, never put on the internet, that still is increasing the risk that their name could somehow, by some mishap, get out. So actually these consent rules are complex. While we generally prefer, in most cases, written consent, there are exceptions. Now, there's special considerations when we think about consent in the case of vulnerable populations. So some types of populations may not be capable of providing informed consent. So children, so we need special plans for recruiting children into a survey. Typically, we need to also secure the consent, written consent of the parents, and we have to explain to the parents all of the potential risks of the participation of their children in the survey. The mentally impaired, elderly people who are suffering from dementia or are experiencing cognitive decline. There are other people as well, the mentally ill. They may not be able to make decisions for themselves, but because we are trying to test out certain kinds of interventions or we're trying to learn more about a very serious problem, we do need to conduct research. And then we have to think about and develop a protocol for ensuring that in the absence of their ability to provide consent, that somehow, their interests are properly protected, that they are not put at undue risk. This is a very complex process and we can't really get into detail in this situation right here. Now, there are other situations where research subjects may be not be mentally impaired, they're adults, they can make decisions in principle for themselves, but they may not feel that they have an option to refuse. So these subjects require special consideration as well. So prisoners. In the past, it was not uncommon for researchers to use prisoners as subjects in medical studies. Well, there are real questions about prisoners and whether they can actually give meaningful consent to participation in a study, especially one that might lead to harm for them. Subordinates in a hierarchy. For example, students. It's very common for researchers to recruit their students to participate in various kinds of studies. This is especially true in say, psychology in North America, where undergraduates are routinely recruited for participation in studies. Students, of course, may not feel completely voluntary, or they may not feel that even when they say that they're consenting to the study, they may feel that they're doing so under pressure. So again, we need special considerations there. The economically disadvantaged, the disprivileged. So members of the racial or ethnic groups that have been discriminated against. The poor, these are people who, well on one hand in principle, they are not mentally impaired by any means and they in principle can give informed consent. And yet, because of their status or their perception of their status, they may feel that they are being compelled or pressured to give consent or they may feel that they are unable to not consent. So again, these are all considerations that we have to think about. And IRBs, when they're looking at protocols involving any of these populations, the research proposals will get special attention and special consideration. Special issues and considerations apply when we think about informed consent in ethnography and participant observation, and other kinds of qualitative research. So there's no relaxation of the standards when it comes to doing ethnography. Consent matters there as well. Now, researchers at the very minimum need to disclose who they are and what they are doing when they are conducting an ethnography or a participant observation or some other kind of qualitative research study involving contact with people. Deception about identity or purpose is almost never acceptable when it comes to qualitative research. If you're going to study some particular population of interest to you, you have to explain who you are and why you are conducting the study. Now, whether consent should be written or oral, and who it should be secured from may depend on the setting. There are situations where it might be impractical to obtain written consent from everybody. Somebody who's conducting an ethnography of a particular venue or a particular group of people over an extended period of time. People coming and going, some people appearing only occasionally. It's not realistic to ask to get a form from everybody, especially if many of these people, their identities might not even be known to the researcher, and they are therefore, inherently anonymous. So, these kinds of complexities have to be dealt with in the process of IRB review. Now, different criteria may also apply for observations in public spaces as opposed to private spaces. So, we tend to think of things that occur in public as having a lower expectation of privacy, and especially if the individuals are anonymous. So, an ethnographer who is studying the interactions in a public space like a park and is not contacting or interacting with the individuals, or if they are interacting with them, is not collecting any actual identity information, the standards for obtaining consent may be fairly straightforward. Perhaps oral consent will be sufficient. But in a private space, then it's much more likely that a higher standard will apply, possibly including written consent of participants, and a detailed explanation of what the researcher is doing there. So there's actually a lot more issues when it comes to consent. We can't cover them all here. But you'll have to learn more as you move forwards information that'll be specifically relevant to your own subdiscipline. Now in the next module, I'm going to come back to the issue of confidentiality as well as a few other specific issues that appear in certain areas within social science research.
