The voices of American Indian and Alaska Native people need to be heard. Elders are critical in the thriving and revival of their communities.
American Indian and Alaska Native people and other marginalized groups are underrepresented in data and research. As a result, there is little scientific information about the population.
Enrolling American Indian and Alaska Native people and other non-white racial and ethnic groups at higher risk for dementia and other related memory problems is a national priority (NAPA).
Promoting the importance of research and advancement in the field of dementia and memory problems will preserve brain health in all communities, including American Indian and Alaska Native communities. If we can make improvements, our communities will continue to benefit from the knowledge and wisdom of their elders for generations to come.
How are Native people now protected from unethical research practices?
Marginalized groups, including American Indians and Alaska Native people, have faced a long history of abuse from outside researchers. This distrust comes from researchers failing to conduct collaborative, transparent, and respectful studies. While the past can not be forgotten, it is important to know there are now requirements in place to protect people who participate in research and their privacy (NACE).
Clinical trials are required to follow a plan known as a protocol. The protocol balances the risks and benefits for participants and answers specific research questions. A protocol will include:
- the goal of the study
- who can participate
- protections in place against risks to those participating
- details about the tests, procedures, and treatments
- how long the trial is likely to last
- and what information will be gathered during the study (NIH; What are clinical trials and studies?).
Members of the research team, led by the principal investigator (PI), are responsible for monitoring the participants’ health to ensure the study’s safety and effectiveness. It is important to note that most studies are overlooked by an Institutional Review Board (IRB). IRBs are committees of people that are responsible for protecting the rights and safety of the people who take part in the research.
Why is it important to participate?
We know the biology and science of dementia and likely dementia treatments are different for Native people, but we don’t have enough research to know how.
For researchers, lack of participation can result in unmet scientific goals. By not reaching the recruitment target, scientists will lack diversity in the sample and, as a result, will not have results that are generalizable to the population (NIH; Why is diversity and inclusion important in clinical trials?).
Not reaching recruitment targets can slow down or even stop medical advancement of effective treatment and prevent some populations from experiencing the benefits of research advances and delivery of high-quality care (UCSF; Diversity in research participation: Why it’s important).
People who know someone with dementia have a higher perceived personal risk. Personal perceived risk means that on an individual level, they feel that they are at a higher chance of also having dementia or memory problems. Perceived personal risk is a driver of willingness to participate in research. This is due to the desire to see changes for oneself and future generations. From a list of 9 reasons, contributing to a cure for dementia was one of the top motivators for American Indians and Alaska Natives to participate in dementia research.
Diversity and inclusion in research are essential. People may experience the same disease differently. It is crucial that clinical trials include people with various lived experiences, living conditions, and characteristics like race and ethnicity, age, sex, and sexual orientation so that all communities benefit from advancements in scientific knowledge.
Creating hard data points on the current state of health services for American Indian and Alaska Native elders will make it clear where areas of improvement are most needed and where current strengths are within communities.
