Guidelines for Informing Policy via Data CHAPTER 5 - COLLECTING DATA: GETTING STARTED (page 2)
5.2.1 Ethical Considerations
In all data-collection activities involving human populations, there are ethical concerns. Considering those concerns during the earliest stages of planning, and during all other stages, makes it much more likely that both researchers and their staff will not inadvertently engage in unethical practices. There are two main issues to consider:
5.2.1.1 Confidentiality
When individual data are collected from a human population, it is the ethical responsibility of the data collectors to keep that data confidential - in order words, to ensure that the information collected is not disclosed to individuals not involved in the project, and that all individuals involved in the data-collection project have sworn to keep the data secret. That does not mean that none of the data can be released; it just means that any data that are released cannot be traced back to the original person who provided the information.
Ensuring confidentiality is more difficult than simply removing identifying information from data before it is released and having staff sign confidentiality statements. If data are collected from a very few individuals in a village, and those data are released with names removed but villages still given, local villagers may be able to easily identify the answers of individuals based on the data provided.
An informal rule is that if data are released, they must be identical for at least 10 individual records on every variable that could make a person identifiable, in other words, any cross-classification table created from the data should have at least 10 records in each cell. In the village example, if less than 10 villagers are selected in a sample, then "village" is not a variable that can be released as part of the data. Other variables that could identify individuals include age, gender, name, address, ethnicity, race, income - basically, any variable that described a publicly known aspect of a person. In addition, ethical practice demands that variables that could lead to the potential harm of an individual, such as variables relating to spousal abuse, should be considered variables that could make a person identifiable. This issue is further discussed in 5.1.1.3 below.
5.2.1.2 Informed Consent
It is also the ethical responsibility of a researcher to ensure that informed consent is gained from every respondent. For consent to be informed, the respondent must understand the goals of the research project, what data will be collected from them, in what format that data will be made available to the public, and what parts of the data will be kept confidential. Informed consent is usually achieved in one of two ways: either the respondent is given an informed-consent statement to read and sign, or an informed-consent statement is read to the respondent and he/she is asked to give their consent to the survey verbally. If there is the possibility that the respondent could come to harm from participating in the survey, and the researcher is aware of that possibility, then he/she must disclose that information to the respondent.
5.2.1.3 An Important Question
Even if a data-collection project has ensured confidentiality of the data and has obtained appropriate informed consent from each respondent, it may not be operating ethically. An important question that every researcher must ask before beginning a data-collection process is: Will the collection of this data ultimately provide more benefit or more harm to the population being interviewed?
Many researchers work on the assumption that any data collected must be of greater benefit to the population of interest than any harm that the data-collection procedure could produce. But that is not always the case. There are two obvious examples of when data collection might cause more harm than benefit: when data are collected about traumatic information, and when data are collected about sensitive information or illegal activities.
Data collected about traumatic experiences, for example, sexual assault, human rights violations, or miscarriages, can be used to benefit a population. Such information might be used to enact protective legislation, develop reparations programmes, or locate new health clinics. However, many research projects do not have such tangible goals in mind.
If information is to be collected about traumatic experiences with no guarantee of a tangible benefit to the traumatised population, then that population needs to be approached with an attitude of "do no harm." For example, counselors might be sent into the field with interviewers to provide services to traumatised respondents, or interviewers might come to interviews with detailed information about services available for traumatised individuals. The respondent must not be misled into thinking that the survey will be used for a direct tangible benefit if that is not the case.
If reporting on the traumatic event might endanger the respondent - if, for example, the respondent would be a target of additional violence or harm for having reported on the initial event - then the ethical choice might be not to collect the data on the traumatic event at all. If the entire traumatised population might be put at risk of harm by reporting on the traumatic events, then the most ethical choice might be not to engage in the data-collection project at all.
When sensitive information is collected, some of the same considerations apply, for example, the need to compare the benefit of collecting the data with the potential harm to the respondents. In some cases, such as in the case of illegal activity, the collection of sensitive information requires additional confidentiality protections in order to protect that data from being seized by a government or police force. Potential data safeguards are discussed in Section 10.6.2 of this manual.
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