The principles
People affected by social inequalities, precariousness or poverty, social exclusion or low literacy are more likely to face challenges when navigating through our health system. Yet, such people are under-represented in research. Fostering greater participation in studies, as well as close and respectful collaboration between researchers, patients, and community leaders, could help to improve health services.
Because they may have difficulty understanding the information provided in a research project, these people affected by social inequalities, precariousness or poverty, social exclusion or low literacy are said to be in a vulnerable situation in a research context. Because of this vulnerability, all stakeholders in the research process must assume ethical obligations towards these persons. Such ethical obligations often mean establishing special procedures to protect their interests, which must be respected in all research projects involving them. Research using visual methods, whether or not it involves people in vulnerable situations, also raises its share of ethical questions.

Ethical principles

People in vulnerable situations in research contexts must be treated with respect, regardless of the situation, and accepted as they are, regardless of their individual characteristics (e.g., age, gender, health status, abilities) or their marginality in the eyes of the majority. They deserve to be respected for the role they play within their families, among their friends, and within society and must be treated as fully equal human beings and useful members of society.

People in vulnerable situations in research settings are at increased risk of harm. An example of potential harm to people affected by social inequalities, precariousness or poverty, social exclusion or low literacy would be a decline in self-esteem or the occurrence of discrimination against them following the publication of the results of a study that involved them. Academic researchers (as opposed to co-investigators who are members of the community or a community organization) are responsible for the physical, mental, and social well-being of the vulnerable people participating in their study. They must therefore ensure that the risks to vulnerable people and their communities are minimized and that they are informed of the potential residual risks.

It can be problematic to ensure the anonymity of participants in studies using visual methods. Often, these people want to make their stories public. However, they may experience regrets later on in this regard. Let us take the example of people participating in studies related to addiction or mental illness in a small or medium-sized community. Presenting their story publicly could cause them harm later on (e. g. job search). They need to be well informed about this.

Anyone appearing in a visual must consent to be seen after having the risks and benefits of the exercise explained to them. This is particularly true in the digital age where images can be shared instantly on the Internet and are difficult to remove.

Studies with a genetic component also require special attention. Let’s take the example of a research participant who discloses in a visual that they have a hereditary disease. This disclosure could cause anxiety, stress, or distress among their relatives who might learn that they too, or one of their descendants, are likely to have the same disease, given its genetic component. The relationship between the participant and their relatives could be affected as a result of this public disclosure. All these risks must be explained to participants.

Some people may have given their consent to appear in visuals (e.g., photos, videos) to generate research data, but may not agree to appear visually when disseminating the results (e.g., exhibiting photos or showing videos to the public). It is important to ensure consent for each of these two steps in the research process.

It is sometimes tempting to present shocking images – to draw attention to a problem, to make the person looking think, or for aesthetic reasons. In this respect, the visual form is a very powerful mode of expression. However, it must be remembered that making visuals more dramatic in order to make them more spectacular at the expense of preserving the dignity of individuals is a serious breach of ethics. 

The attribution of copyright on visual creations made as part of a study can be a real headache. Who owns the rights to these creations? The researchers? The research participants who created the works? The artists or directors, even in the case of a production made with material provided by research participants? Who makes the final decision on where and when an exhibition is held, who will attend or how to reproduce drawings, photos, videos? These questions must be considered before the project begins in order to avoid actors feeling that their rights are being infringed once the study has begun.

In the event that members of a research team use visuals from Internet pages, film or video sequences, printed material, or any other media, they must ensure that they identify the copyright owner and pay for the use of the visuals if required.

It is important to assess whether the images used in the study contribute, even unconsciously, to the reproduction of stereotypes or whether they are likely to stigmatize people with less education, illiteracy, or recent immigration backgrounds. How are people visually represented in the study and in the dissemination of results?

It is imperative to ensure that research participants do not put themselves at risk of anything in creating a visual. The research team must carefully assess the potential risks to their safety and security and warn them of such risks. Consider for example the case of walking narratives in red-light districts.

The visual must be representative of reality. It must not misrepresent an individual or a situation or alter the original meaning of the image. It should not be manipulated technologically to change or amplify its effect if this is not the objective of the study.

It should be noted that some jurisdictions have laws that must be respected. In Quebec, the right to an image is fundamental. Anyone can publish in a newspaper, magazine, advertisement or on social media a photo or video in which they appear. Everyone can use their own image as they wish.

However, be careful! If other people appear in these photos or videos, it is necessary to obtain their consent before publishing them, because if they believe they have suffered injury (e.g. discomfort, hassle, damage to self-esteem) as a result of publishing their image, they are entitled to claim damages from you.

However, some exceptions apply. If a photo is taken in a public place (e.g. in front of a historical monument), in a crowd (e. g. a sporting event), if it presents a celebrity (e.g. a singer, actor, athlete), or if it serves to inform the public (e.g. a photo of an accident), no action may be brought against the person who published it.