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Structural forms of discrimination refer to social and economic policies, laws regulating the distribution of health and social resources, and social stratification based on factors such as race, ethnicity, religious affiliation, immigration status, ability, gender identity, sexual orientation and other identity-based forms of marginalization.
Note: While we highlight racism's role as a structural factor that influences participation of diverse populations in clinical trials, members of white/Anglo/Caucasian communities also struggle with the criminal justice system, skepticism of the medical system, and other structural factors outlined in this domain. Furthermore, all people regardless of race, gender, sexual orientation, age, socioeconomic status and educational level harbor implicit biases that can impact how they interact with the medical system and researchers. See Domain 5 for a tool to unpack your implicit biases.
We have identified major structural forms of discrimination and their impact on potential participants. Here we offer a brief outline of those factors. Domain 3 will then expand on these, offering tips and strategies for addressing them from a strengths-based approach.
Theme 1: Geography
Transportation Instability
Having limited access to transportation could make it challenging for an individual to make it to their appointments for clinical trials if they are conducted in person.
Geographic Location and Travel Time
If an individual lives in a more rural setting, they might not have the access to information about clinical trial participation that is disseminated in urban settings. Travel time could play a role in the availability a person has to commit their free time to clinical research, especially if it requires a lot of time and effort to reach the physical location.
Theme 2: Racism, Skepticism, and Distrust of Researchers
Criminal Justice Involvement
Stigma associated with a record of criminal activity could contribute to an individual feeling like they would not qualify for participation in a clinical trial due to past experiences of ineligibility.
Racism
Researchers and healthcare institutions in the earlier parts of the twentieth century have exploited and harmed people of color, which has increased wariness and distrust for some communities of color to participate in clinical trials.
Skepticism of the medical system
Medical providers often operate under outdated approaches with stigmatizing beliefs about substance use and substance use treatment which cause patients to feel judged and avoid healthcare systems.
Theme 3: Economic and Material Factors
Housing Instability and Homelessness
A lack of stable housing could lead to significant stress on an individual’s life, resulting in negative coping skill use as well as a shift in focus from clinical trial participation to survival tactics.
Poverty
Not having enough money to live comfortably could impact an individual’s decision to participate in clinical research due to time constraints and perceived value for giving their time based on the compensation.
Theme 4: Education, Stigma, and Health Literacy
Lack of Formal Education
A lack of formal education could mean that an individual is not aware of the opportunities available for their participation in a clinical trial and the benefits they could receive.
Health Literacy and Misinformation
Misinformation has been a growing concern for the scientific community with the widespread use of social media and news platforms, which are pervasive and often provide incorrect information. This prevalence could limit an individual's trust in the motivation behind the trial and its potential outcomes.
Language and Representation
Clinical and academic language can be challenging to understand without the background information or education, which is not common for participants to have. This can make it difficult for potential participants to fully understand the background of an informed consent and what they will be involved in during a clinical trial.
Theme 5: Gender and Sexuality
Sex and Gender Identity
Historically, female/woman-identifying individuals absorb much of the household labor and responsibility within a family unit, including childcare, which can limit the amount of time they are able to give to participate in clinical trials.
Members of the LGBTQIA+ community have traditionally been excluded from clinical trials.