Structural forms of discrimination refer to social and economic policies, laws regulating the distribution of health and social resources, and social stratification based on race, ethnicity, religious affiliation, immigration status, ability, gender identity, sexual orientation and other identity based forms of marginalizations.
We have indentified 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 how to address 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 takes a long time and effort to make it to 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.
Theme 3: Economic/material factors
Housing instability, homelessness
A lack of stable housing could lead to significant stress on an individual’s life, resulting in an increase of 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 / 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 the trust that an individual has in the motivation for the trial and potential outcomes.
Language and representation
Clinical and academic language can be challenging to understand without the background 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/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.