We have designed Cultural Snapshots (CS), rooted in Critically-Engaged Civic Learning (CECL; Vincent, Moore, Lynch, Lefker, & Awkward, 2021). CECL views all constituent stakeholders as invested partners in co-design, implementation, and evaluation of CECL initiatives, and is founded on redistributed power and authority to promote civic learning and social change. In partnership with the City of Dubuque, Loras College created a research design which seeks to understand challenges, needs, and hopes of vulnerable populations. This work has been recognized regionally through Iowa Minnesota Campus Compact, and internationally through Uniservitate. Previously, this model was used to identify inequitable fine burden shouldered by individuals within Dubuque.
In the Cultural Snapshots projects, in partnership with the City of Dubuque, we will work to understand the experience of various cultural sub-groups within the city of Dubuque. In order to better understand the experience within the city and in connection with various resources (or the lack of experience and connection with various resources), we conduct focus groups with targeted cultural subgroups. The purpose of Cultural Snapshots is to introduce the lived experiences of particular cultural/subcultural community to the broader community in Dubuque, to identify quality of life issues directly affecting the community, and to begin to take steps to address disparities. The reports are used to invite community organizations to create bridges of understanding and reciprocal relationships with the members and leaders in the cultural/sub-cultural community in order to effectively address disparities.
Unlike experiments and trials in clinical settings, which have clear beginnings and endings, focus group and community-based research generally is ongoing, at times sporadic, and takes place in dynamic, natural settings, often where participants are able to decline to participate at any point in the process. Just as in daily life, in these natural settings of research there may be a high probability of risk, but the magnitude of such harm, like uncertainty, mild embarrassment or boredom, is usually low. Focus group research may involve significant risks of harm-for example, discrimination, disruption of personal and family relationships, loss of rights or claims, civil or criminal prosecution-usually as the result of disclosure of private, identifiable information such as data gathered in interviews or knowledge of certain groups of participants gathering at particular times for participation in research.
Between privacy and confidentiality, confidentiality is arguably the more important one in research. Privacy is easily assured with proper consent procedures, while confidentiality of data takes more effort to maintain. All information gathered in a research study should be considered “information that an individual has disclosed in a relationship of trust,” and participants have the right to expect that it will not be divulged without their permission. The easiest way to protect confidentiality is to collect anonymous data. Anonymous data are data that are not connected to information that can identify the individual participant. If there is no connection between the participant and their data, even the most sensitive studies can qualify for exemption assuming they are minimally risky.
Not all studies can be anonymous. In the protocol, you need to justify why it is necessary to collect identifying information about an individual, include a list of identifiers that you will collect (with the understanding that you will not collect more identifiers than you need), describe how this information will be used and how it will be collected, and describe what you will do to destroy this information once it is no longer needed. The consent form should also include this information to help the participant understand how their information will be used and the consent form should also state who has access to their identifying information and their study data (usually phrased as “members of the research team”). Also, your consent form should be used to inform participants about your privacy and confidentiality policies.
An identifier is any data that can either directly identify an individual or link an individual to their identity.
Name
Information that might locate a person
Street address
Phone Number
Email Address
Place of employment
IP address
Personal Website
Identifying Numbers
Social Security (including partial)
Birth Date
Individual numbers - e.g. Driver's license, employee ID, student records number, medical records
Another consideration is even with the use of minimally identifying information, demographic information in particular contexts might easily identify someone. For example, if in the context of a workplace attitudes study, you assess a particular employer and ask general demographic information - race, age, gender identity, level at work, if you only have a few people who fit a particular constellation of demographics, like junior level black woman, that becomes identifying.
In cases where anonymous research is required there may be an alternate process for the collection of receipts. Accountability of the funds is required, but an alternate process can be used for cases where there is a concern of anonymity.
Keep Log (template below) at the project level for three years.
Ensure a third party witnesses disbursement of funds on your log.
Participant ID | Date | Amount | Card Number (if gift card) | Initials of Participant | Third party signature
Many potential participants may have never been part of a focus group and may not understand what it entails. All recruitment materials should clearly identify that a focus group will be used to collect data and should explain what a focus group is, how many people will be involved, and about the potential benefits and risks of participating, in addition to other details about the research.
The nature of a focus group is such that confidentiality cannot be guaranteed. The researchers must explain to participants the procedures in place to maintain confidentiality of the research data and they must inform participants not to repeat what is said in the focus group to others. For research that is minimal risk adding a paragraph to the informed consent detailing issues of confidentiality for focus groups will suffice.
This paper discussses the challenges of focus groups and provides guidance, see a snipet from the abstract below.
Sim, J., Waterfield, J. (2019). Focus group methodology: some ethical challenges. Quality & Quantity, 53, 3003–3022. https://doi.org/10.1007/s11135-019-00914-5
"The principal challenge in obtaining consent lies in giving a clear account of what will take place in the group, owing to unpredictability of the discussion and interaction that will occur. As consent can be seen in terms of creating appropriate expectations in the participant, this may therefore be hard to achieve. Moreover, it is less straightforward for the participant to revoke consent than in one-to-one interviews. Confidentiality and anonymity are potentially problematic because of the researcher’s limited control over what participants may subsequently communicate outside the group. If the group discussion encourages over-disclosure by some participants, this problem becomes more acute. Harm in a focus group may arise from the discussion of sensitive topics, and this may be amplified by the public nature of the discussion. A balance should be struck between avoiding or closing down potentially distressing discussion and silencing the voices of certain participants to whom such discussion may be important or beneficial. "
No matter whether data is research, financial, or administrative data, there are reasonable levels of controls that can and should be placed regarding access.
Normal access to data can be set for as follows:
Funding Sponsor – Sponsor access may be limited by the terms of the award document. In some cases, sponsors will want access to all research data. Sometimes, sponsors may agree or even propose in their terms and conditions that their access be limited to copies of intended publications or copyrightable materials. Much will depend upon the nature of the work being done and whether the sponsor intends to further develop the research.
Intellectual Property Licensees – Companies that license inventions or software will need access to the data upon which the intellectual property is based. Frequently companies will license inventions resulting from basic research that are not fully developed and ready to market as a product. In order to engage in the development of such licensed technology, the company will need access to the research data. This will be addressed in the license and specifically covered by the terms of a Confidential Disclosure Agreement. The latter will give the company access to the data but also prohibits the company from further sharing the data with other parties.
Institution – The institution will need access to the data for several reasons. The institution is responsible to sponsors to provide the data or access to it should the sponsor make a valid request. Second, there could be lawsuits pertaining to the data and the institution will be regarded as the owner. Third, there may be administrative actions that require institutional access to research data. These actions could include cases of research misconduct, conflicts of interest, or possibly disputes between or among researchers that require institutional intervention.
Others – If federal funding is involved in sponsoring the research, members of the public may seek access to research data by using the Freedom of Information Act (FOIA). This was discussed previously in the Ownership section. While such use of the FOIA may be attempted, there are clear rules promulgated by the Office of Management and Budget that confine fulfilling such FOIA requests to that data that is used by federal agencies in their formulation of federal policy. The FOIA can also be used to gain access to funded proposals, but the background data that was used in creating the proposal is not similarly accessible.
Judicial process - Law enforcement can access information through a subpoena, search warrant, or other court order.
A waiver of documentation removes the requirement of collecting signatures from the research participant. All of the required informed consent information is still provided to the participant but the documentation of the process (the actual signature) has been waived by the IRB. This process is often used in minimal risk research involving the administration of online/electronic or mailed surveys, telephone interviews or when anonymous sensitive information is collected and you do not want any written documentation that links the participants to the research study.
In cases in which the documentation requirement is waived, the IRB may require the investigator to provide participants with a written statement regarding the research.
Federal regulation 45 CFR 46.116(c) (Common Rule) provides for waiving consent in the following circumstances. These provisions do not apply to FDA-regulated studies.
The project is to be conducted by or subject to the approval of state or local government officials and is designed to study, evaluate, or otherwise examine: (i) public benefit or service programs; (ii) procedures for obtaining benefits or services under those programs; (iii) possible changes in or alternatives to those programs or procedures; or (iv) possible changes in methods or levels of payment for benefits or services under those programs; and
The research could not practicably be carried out without the waiver or alteration.