Datasharing and marginalized groups

Datasharing and marginalized groups What are the challenges? Dulce Ferraz Professeure junior de psychologie sociale Pôle de Psychologie Sociale , Université Lumière Lyon 2 Ethics and research Stigma and social inequalities - or the social production of vulnerabilities Transgender health Current scenarion on stigma and human-rights abuses Summary Ethics and research https://www.vie-publique.fr/video/281683-video-le-verdictdu-proces-de-nuremberg What is the connection between the Nuremberg Code and health research? International Regulations: Nuremberg Code, Universal Declaration of Human Rights, Declaration of Helsinki, Belmont Report When did ethics in research become regulated? And why? Time to do your research! Code Nuremberg https://www.inserm.fr/wp-content/uploads/2017-11/ inserm-codenuremberg-tradamiel.pdf Déclaration d’Helsinki https://www.wma.net/policies-post/wma-declaration-ofhelsinki-ethical-principles-for-medical-research-involvinghuman-subjects/ Belmont Report https://www.hhs.gov/ohrp/regulations-and-policy/ belmont-report/index.html Why were these documents written? What do these documents say about participant consent? Are there any other reference documents you would like to add? "The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment. The Nuremberg Code Consent Individual, Group, and Community Vulnerability 19. Some individuals, groups, and communities are in a situation of more vulnerability as research participants due to factors that may be fixed or contextual and dynamic, and thus are at greater risk of being wronged or incurring harm. When such individuals, groups, and communities have distinctive health needs, their exclusion from medical research can potentially perpetuate or exacerbate their disparities. Therefore, the harms of exclusion must be considered and weighed against the harms of inclusion. In order to be fairly and responsibly included in research, they should receive specifically considered support and protections. 20. Medical research with individuals, groups, or communities in situations of particular vulnerability is only justified if it is responsive to their health needs and priorities and the individual, group, or community stands to benefit from the resulting knowledge, practices, or interventions. Researchers should only include those in situations of particular vulnerability when the research cannot be carried out in a less vulnerable group or community, or when excluding them would perpetuate or exacerbate their disparities. Declaration of Helsinki Consent - Vulnerable Groups Stigmatization and Social Inequalities - or the social production of precarity "All men are born and remain free and equal in rights” – and then what? Social determination, social norms: we categorize the world based on certain social categories. •Some inequalities have been reduced through social struggles, but true equality has yet to be achieved. •This organization of social life, based on certain categories, is not neutral. •It involves mechanisms that produce domination and submission, creating “dominant” and “dominated” groups. Stigmatization Related to Sexuality and Gender Gayle Rubin, « Thinking Sex : Notes for a Radical Theory of the Politics of Sexuality », in Carole Vance, Pleasure and Danger. Exploring Female Sexuality, 1984. The system of oppression related to sexuality operates based on a hierarchy that values certain sexual practices and identities over others. Its foundations lie in essentialism, which acts as a classifier of what is considered “normal” versus “aberrant,” and in negativity about sex, expressed through the interpretation of sex as a dangerous and destructive force, viewing the genitals as inferior parts of the body, in opposition to the mind and the heart. \ One of the normativities around which social life is organized. A politico-cultural system that, based on the existence of cisgender identity as the norm, oppresses, violates, and dehumanizes people who do not conform to the gender identity assigned at birth (Passos & Simakawa, 2022; Rigg et al., 2015). Cisnormativity underlies and perpetuates transphobia, manifesting in violence, violations, and systematic denial of rights inflicted on trans people (Podestá, 2019). Cisgender normativity (or cisnormativity) I’m missing my final year [to finish high school]. I dropped out precisely because of my transition. And then there came a time when I started shutting myself in my room — I was really in isolation, you know, I wouldn’t go out for anything, because of the assaults I suffered at school, because of the homophobia I faced. But at the same time, I couldn’t tell my family that I was being beaten at school, because they would try to find out why I was being attacked, and they’d end up discovering the reason — and that would become a problem at home too, you know? (Gisele) Ferraz et al. Cisnormativity, human rights and vulnerability of young trans women to HIV: an analysis based on their youth trajectories. Under review. Les personnes transgenres se sont souvent vu refuser des services de santé en raison d'une stigmatisation effective ou ont retardé la recherche d'un traitement en raison d'une stigmatisation anticipée (Hibbert et al.,"Citation2018). Hibert et al. ont décrit que l'identification en tant que transgenre était un facteur prédictif de mauvais traitements en matière de soins de santé et de retard ou de refus de soins de santé. Les participants transgenres séropositifs ont signalé une incidence accrue de divulgation non autorisée de leur statut sérologique ainsi que des taux plus élevés de commentaires désobligeants de la part des travailleurs de la santé. Dans une étude de Glick et al. (Citation2018), 38,97"% des personnes transgenres sont victimes de discrimination dans le cadre des soins de santé et 26,25"% des personnes transgenres admettent avoir reporté les soins en raison de problèmes de discrimination. https://www.tandfonline.com/doi/full/10.1080/01612840.2021.1961330? casa_token=7tqX1MqdYtEAAAAA%3AhSWkDUtgBskBkpuwVhbQDd3gYSFCPu HbfbKjDFc5fTmAs8SYVu1ogPZof-dZy_fpyWqBuGUgJIq9iA •Stereotypes that HIV testers are sexually promiscuous hinder testing. •These stereotypes have also affected perceptions of HIV-related risk. •Fears of sexual rejection could undermine decisions to get tested. •Participants expressed concerns about being identified when getting tested for HIV and being labeled as “HIV-positive." •Participants had experienced stigma regarding their sexual behaviors and identities from healthcare providers, which led them to seek specialized testing services competent in LGBTQIA+ care. •Short videos: Positie UK visibility sharing HIV status https://bmcpublichealth.biomedcentral.com/articles/10.1186/ s12889-022-12761-5 Interseccionality Kimberlé Crenshaw, American legal scholar, 1989. Black women questioned their representation within social movements — feminism (led primarily by white women) and the Black liberation movement (led primarily by Black men). She described combined and overlapping forms of domination, showing that certain minorities are positioned at the intersection of major axes structuring social inequalities. Crenshaw, Kimberle´ Williams (1989). Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics." University of Chicago Legal Forum. Transgender health FOnctions et REprésentations des Sexualités Transmasculines PI: Marie Préau; Coord: Xavier Mabire; Équipe + Conseil Scientifique et Comité de Pilotage Community-based research: Lyon 2 + OUTrans + Unil https://www.outrans.org/projets/forest/ Objectives • To explore representations and practices related to the sexuality of transmasculine individuals in France. Mutual learning and skills transfer throughout the project between Lyon 2 and OUTrans In-depth interviews with: • 13 medico-social professionals recommended by the trans community • 45 transmasculine individuals Consent and Archiving - see PDF Stigma and human-rights abuses Methodological flaws and cisnormative scientific bias Weaponized by antitrans movements Services shut down Thank you [email protected]