3 Consent, informing and confidentiality Flashcards
Informed consent
It is essential that you first get informed consent from your participants. Informed consent means that your participants voluntarily agree to participate in the research, while fully understanding the expected risks and rewards.
Organizational or institutional informed consent
Qualitative research often takes place in the framework of a specific organization or institution. It is important that you get consent from those organizations or institution to conduct your research.
Sometimes the results of your research can shed a rather critical light on the organization or institution. This does not need to be a problem, as long as the institution or organization is open to feedback that can be used to improve their (internal) processes. It is very important to inform them what they will gain from this research.
In order to get consent from the organization or institution, it is thus important to address the scientific independence of your research, and how exactly the results will be published. However, there are specific situations in which you can be asked to not disclose (some of) your results.
Community informed consent
Qualitative research often takes place within a specific community. Even if only a few members of a specific group are selected to participate, the whole community is involved.
It might be important to get consent for your research at the community level. You could have a first meeting where you inform the community about your research, before asking for consent. Alternatively, you could get informed consent from a local representative.
Individual informed consent
It is important that they are not only informed as to what they stand to gain from the research but also what the potential risks entail. Make clear that they are participating on a voluntary basis, and that they can opt-out at any point. Also, be sure to inform them about what happens with their data, with whom these are shared, and how they might be made public in the final research report (e.g. anonymized).
What should informed consent entail?
Every research institution usually has its own formal requirements about what informed consent should entail, but they usually boil down to the same basic principles.
There might be instances where gaining informed consent is not possible - for instance, in the case of anthropological fieldwork, or research in behavioral science - but in these cases, the lack of informed consent should be thoroughly motivated.
Written of verbal consent
Written consent should be sought wherever possible. It provides an auditable record that will prove useful in the event of a dispute regarding the use or storage of data. Research that proposes to use only verbal consent will need to justify why written consent is inappropriate for the study.
Seeking informed and freely given consent
Regardless of form, researchers must make every effort to ensure that participants are genuinely informed about the study and that they voluntarily take part in it. The usual method for getting written consent is that a relatively detailed information sheet is given to participants, along with a consent form. Here, researchers should avoid jargon and use language that is appropriate for the intended participants.
The information sheet
o Name of the project and purpose of the research, including the name of the research institution
o What participation will involve (e.g. in the case of interviews: length, amount and location)
o Potential risks and benefits to participants and others
o Option to withdraw themselves from the research at any time without prejudice, and without having to motivate their choice
o That if the participant withdraws, they should be given the option to have any information they have provided thus far to be removed from the study
o How data will be handled
o Strategies for maintaining confidentiality and anonymity
o Contact details of the researchers
o Who to contact in case of formal complaints (e.g. ethics committee of your academic institution)
o How to request a copy of their personal data, according to the (EU) GDPR laws
Opt-In/Opt-Out
It is generally recognized that assuming informed consent when a participant has not taken the opportunity to explicitly opt-out is poor form. Explicit opt-in consent is therefore preferred.
Sensitive issues
Where research involves sensitive issues, special care is required. You must ensure that participants are fully informed of the nature of the research (ahead of time), and are given time to think before deciding whether or not to get involved. They should also be reminded during the study that they are free to discontinue their participation at any point. It goes without saying that you need to pay particular attention to confidentiality and data management of sensitive data.
Limits to Confidentiality
It is always recommended that participants’ details are anonymized at the earliest opportunity and that their real names do not appear in publications.
However, in some instances, it may be impossible to guarantee that participants will not be identifiable. In such cases, it may be better to discuss with participants whether they are happy to be named and have them agree - as part of the informed consent process – on how their data will be presented.
Confidentiality may also need to be re-considered in cases where a participant discloses something in an interview that suggests they, or someone they mention, is at serious risk of harm and unable to act themselves. In such circumstances, this may need to be reported to the relevant authorities. Any breaking of confidentiality will need to be discussed with the participant.
Deception
Certain forms of social research would be rendered pointless if participants were fully informed in advance of the details of that research. Where an element of deception is involved in a study, one needs to assure
o That there is no other non-deceptive way of investigating the research problem at issue; and that the case can be made that the study’s prospective scientific (or applied) value outweighs the disvalue of the deception involved
o That, before data collection begins, participants are informed about the nature of the study as best as possible in the light of that specific study
o That the deception will be explained to the participants as early as possible – preferably at the conclusion of their participation, and certainly no later than the conclusion of the overall study’s data collection; and that participants will be explicitly informed that they may withdraw their data
o That the study does not involve the possibility of participants suffering any degree of pain or substantial emotional distress
