Social Justice, Vulnerability and Inclusion
'''The aim''' To encourage learners to consider how and why matters of social justice, vulnerability and inclusion are relevant to research and the impacts of research. '''The learning outcomes''' At the end of this module, learners will be able to: #Consider the meaning and relevance of social justice in research. #Explain the importance of inclusion in research and the ethics issues associated with exclusion. #Describe the special measures that need to be implemented for the ethical inclusion of vulnerable populations in research.
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[[File:M5.png|center|frameless|600x600px]] ‘Leaving no one behind’ is a principle often invoked in the context of social justice. It emphasises the importance of ensuring that progress and development benefits all individuals and groups within society, particularly those who may be marginalised or vulnerable. The concept recognises that systemic inequalities and discrimination can prevent certain groups from fully participating in and benefiting from development initiatives. Marginalization in research refers to the systematic exclusion, underrepresentation, or neglect of certain individuals or groups within the research process. Marginalized groups can include those who are disadvantaged or oppressed based on factors such as race, ethnicity, gender, sexual orientation, socioeconomic status, disability, or other identity markers. Marginalization can occur at various stages of the research process, including study design, data collection, analysis, interpretation, and dissemination.
[[File:M6.png|center|frameless|600x600px]] Addressing marginalization in research requires a commitment to diversity, equity, and inclusion throughout the research process. This includes actively involving marginalized communities in research design and decision-making, adopting culturally responsive methodologies, acknowledging and addressing power imbalances, and prioritizing the voices and perspectives of those who have been historically marginalized. However, the equitable inclusion of all is not always easy and can raise specific ethical concerns. Including historically marginalized populations in research requires sensitivity and may, on some occasions, require adaption of research processes, methodologies and assumptions.
[[File:M3.png|center|frameless|600x600px]] '''Social Justice in Research cont.''' While it may be difficult to imagine that research conducted nowadays could involve the same degree of social injustice as the Tuskegee Syphilis Study, social injustice remains a challenge that researchers must address. Here are some short examples of how social injustice might be perpetuated through contemporary research. Click on the different images to see examples of situations in which social justice is relevant and the consequences of not taking this into account.
[[File:M4.png|center|frameless|600x600px]] '''Social Justice In Research Ethics Codes'''
[[File:M7.png|center|frameless|600x600px]] We now consider a short example case in which social justice is relevant. In this case, both the exclusion and inclusion of a specific population provoke ethical and methodological questions. We encourage you to reflect on the intersection of social justice and research ethics in this case to consider the pros and cons of inclusion and exclusion.
[[File:M8.png|center|frameless|600x600px]] The word vulnerability can be broadly used to describe a state or condition of being susceptible to harm, exploitation, or other adverse outcomes due to various factors or circumstances. It is difficult to define precisely because multiple and diverse factors can contribute to vulnerability such as systemic inequalities, health status, social dynamics, environmental conditions, or individual characteristics. Additionally, it can affect individuals, groups, or communities and manifest in various ways. Furthermore, the word vulnerability does not have a precise equivalent in many languages. Still, it is important for researchers to have an understanding of the concept of vulnerability because it has significant implications for research ethics.
[[File:M9.png|center|frameless|600x600px]] Well actually, vulnerability emerges when you have life challenges, and you have limited resources. And vulnerability can be intrinsic to the person, or it can be something that emerges at some point of your life. So, if you think about for instance, persons with visibility impairments, so they are not able at some point to understand exactly what the research is about or to have a full understanding of the informed consent. So, this is a group of vulnerable people.
Maria Maia - Aspects of Vulnerability in Research
[[File:M2.png|center|frameless|600x600px]] The most prominent case of social injustice in research, is that of the Tuskegee Syphilis Study, conducted by the United States Public Health Service between 1932 to 1972 in Tuskegee, Alabama.
[[File:S1.png|center|frameless|600x600px]] It is generally agreed across ethics codes that the involvement of people with these types of vulnerabilities requires special justification and special protections. Indeed, the Declaration of Helsinki states that medical research with a vulnerable group is only justified if the research is responsive to the health needs or priorities of this group and the research cannot be carried out in a non-vulnerable group (Article 20). Of course, we need to protect people from exploitation in research but ethics codes and processes that aim to protect vulnerable populations might inadvertently lead to the exclusion of certain individuals if they are wrongly labelled as vulnerable, or the researchers do not understand how to mitigate their vulnerability in research.
Vulnerability in Research Ethics Codes cont.
[[File:S2.png|center|frameless|600x600px]] Do you think you could identify who is vulnerable in research? Take a moment to consider this issue and then click on the feedback tab below. The most striking commonality across research ethics codes is the suggestion that vulnerability can stem from belonging to a certain group. When vulnerability is mentioned, it is commonly accompanied by examples of the sorts of groups to whom this applies. A problem with the naming of particular groups, even as examples, is the implication that people are to be considered vulnerable simply by virtue of belonging to a certain group. This can render the term unhelpful and patronizing. Nowadays, there is acknowledgement across many codes and guidelines that determining who is vulnerable requires a nuanced approach because vulnerability can stem from a range of factors, for instance, power differentials between researchers and participants, capacity to understand, unrealistic expectations and so on. We need to be careful not to jump to conclusions about who is vulnerable.
[[File:S3.png|center|frameless|600x600px]] In the following video there will be pop up information, be sure to click on the video to continue. There are undoubtedly times when a blanket approach to protection is warranted for certain entire groups, like babies and young children, or for adults with severe cognitive impairment. However, this protectionist stance is often applied to entire groups of people who do have the capacity to provide consent (like impoverished persons, for example). So why does this happen? To answer this question, it is helpful to remember that research ethics codes originated in the biomedical domain, and were intended to prevent the kinds of abuses that occurred in the Tuskegee Syphilis Study, whereby people might be subjected to a high risk of harm in research, without their knowledge or consent. The resolve to protect people from exploitation in research runs deep, but we need to be careful not to patronise participants by well-meaning exclusions that serve to perpetuate systemic inequalities and disadvantages.
[[File:S4.png|center|frameless|600x600px]] You can try these questions to see whether your learning from this module addresses the intended learning outcomes. No one else will see your answers. No personal data is collected.
[[File:S6.png|center|frameless|600x600px]] '''Equality''' Equality implies that people are treated equally in terms of rights, or access to services etc. without discrimination or unfair advantage. In the context of social justice and human rights, equality involves equal access to resources and opportunities, as well as ensuring that individuals are not disadvantaged or marginalised. This can include efforts to address systemic inequalities, discrimination, and barriers to full participation in society. '''Equity''' Equity refers to fairness in the distribution of resources, opportunities, and rights. It involves ensuring that everyone has access to what they need to thrive and reach their full potential, regardless of their background, identity, or circumstances. Unlike equality, which aims to treat everyone the same, equity recognizes that different individuals or groups may require different levels of support or resources to achieve equal outcomes. [[File:S7.png|center|frameless|300x300px]] '''Human Dignity''' Human dignity can be thought of as the inherent value and worth that every individual possesses. It encompasses the idea that each person is deserving of respect, honor, and ethical treatment, regardless of their background, identity, or circumstances. Respect for human dignity requires fostering environments that value diversity, protect human rights, and ensure the wellbeing and dignity of every individual within society. '''Inclusion''' Inclusion in research requires the active and meaningful involvement of individuals and groups from diverse backgrounds, identities, and experiences. It requires the creation of research designs, environments, systems, and policies that value and respect the contributions and perspectives of every individual, regardless of differences such as gender, ethnicity, religion, sexual orientation, disability, or socioeconomic status and so on. '''Solidarity''' Solidarity refers to cooperation and mutual support amongst individuals or groups, especially in pursuit of common values or goals. Solidarity recognizes the interdependence and interconnectedness of all members of society and emphasizes the importance of working together to create positive change and promote the wellbeing and dignity of all individuals. '''Structural Violence''' Unlike the more obvious physical violence, structural violence refers to a hidden violence that is embedded within the structures of social, economic, political, and cultural systems. It is rooted in unjust systems and power imbalances and operates through unequal power dynamics, systemic injustices, and institutionalized inequalities that provoke and perpetuate harm and suffering. Addressing structural violence requires challenging and transforming the underlying structures, systems, and ideologies that perpetuate inequality and oppression.
[[File:Mm1.png|center|frameless|600x600px]] '''What Is Social Justice? Quiz''' There is no unified definition of social justice. For this reason, in this module we take a working and broad definition of the concept. We interpret social justice as a guiding principle for achieving a just society, including full and equal participation of individuals in all social institutions;fair, equitable distribution of material and nonmaterial goods;and recognition and support for the needs and rights of individuals. To do that, historical processes of oppression and domination of certain populations need to be taken into account to understand current inequalities and injustices. Even if you are not already familiar with the terms ‘social justice’ and ‘social injustice’, you are likely already familiar with the concepts. Take a look at the following eight questions and select the correct answer from the options provided. Be sure to click the small left and right arrows to navigate between questions.
[[File:M10.png|center|frameless|600x600px]] While many research ethics codes and guidelines have something to say about the inclusion of vulnerable people in research, in general they promote the same two messages: first, that most vulnerabilities are associated with voluntariness, and second, that certain groups should be awarded more protection than others. When vulnerability is mentioned in research ethics codes, it is primarily in relation to the ability to provide informed consent. This can be associated with innate characteristics (for instance, young children or adults with severe cognitive dysfunctions). It can also be associated with circumstances that might impact upon the voluntariness of their consent (for instance, with prisoners or employees). Some codes also mention risk-based vulnerabilities whereby vulnerability stems from being at an increased risk of mental or physical harm (for instance, pregnant women). '''Exercise Feedback''' The Australian National Statement (2023, p12) provides an extensive list of the sorts of harm to which research participants might be vulnerable including: *physical harm: including injury, illness, pain or death;*psychological harm: including feelings of worthlessness, distress, guilt, anger, fear or anxiety related, for example, to disclosure of sensitive information, an experience of re-traumatisation, or learning about a genetic possibility of developing an untreatable disease;*devaluation of personal worth: including being humiliated, manipulated or in other ways treated disrespectfully or unjustly;*cultural harm: including misunderstanding, misrepresenting or misappropriating cultural beliefs, customs or practices;*social harm: including damage to social networks or relationships with others, discrimination in access to benefits, services, employment or insurance, social stigmatization, and unauthorized disclosure of personal information;*economic harm: including the imposition of direct or indirect costs on participants;*legal harm: including discovery and prosecution of criminal conduct.
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[[File:S8.png|center|frameless|600x600px]] '''Further reading and references''' Abbott, K. (2014). Social Justice. In: Michalos, A.C. (eds) Encyclopedia of Quality of Life and Well-Being Research. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-0753-5_2772 Bell, L. A. (2007). Theoretical foundation for social justice education. In M. Adams, L. A. Bell, & P. Griffin (Eds.), Teaching for diversity and social justice (2nd ed.). New York: Routledge. Brady, E., Nielsen, M.W., Andersen, J.P. et al. Lack of consideration of sex and gender in COVID-19 clinical studies. Nat Commun 12, 4015 (2021). https://doi.org/10.1038/s41467-021-24265-8 CIHR, NSERC, SSHRC (2022) Tri-council policy statement: ethical conduct for research involving humans, December 2022. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. https://ethics.gc.ca/eng/documents/tcps2-2022-en.pdf. Accessed 21 Jan 2024 Coleman, C. H. (2009). Vulnerability as a regulatory category in human subject research. Journal of Law, Medicine & Ethics, 37(1), 12-18. Council for International Organizations of Medical Sciences (CIOMS) (2016) International Ethical Guidelines for Biomedical Research Involving Human Subjects. Available at: https://cioms.ch/publications/product/international-ethical-guidelines-for-health-related-research-involving-humans/ Gordon BG. Vulnerability in Research: Basic Ethical Concepts and General Approach to Review. Ochsner J. 2020 Spring;20(1):34-38. doi: 10.31486/toj.19.0079. PMID: 32284680;PMCID: PMC7122263. Luna, F. (2019). Elucidating the Concept of Vulnerability: Layers Not Labels. International Journal of Feminist Approaches to Bioethics, 2(1), 121–139. http://www.jstor.org/stable/40339200 WMA (2013) WMA Declaration of Helsinki: ethical principles for medical research involving human subjects. World Medical Association. https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/.