Research is vital to advancing our understanding of, and treatments for, mental health conditions. Scientific research can (and has) lead to effective early intervention strategies; better understanding of mental illness’s environmental and social factors; and further knowledge on how other elements—like genetics, physical health and medications—can impact recovery outcomes. Because of the answers research can provide, it is the ultimate source of hope for people experiencing mental health conditions and their families.
Participating in Clinical Trials
Clinical trials help advance research and treatment for people today and in the future. In these trials, an intervention (like psychotherapy or medication) is often compared to a placebo or different intervention. Research subjects are often randomized in clinical trials, so a subject might get a new treatment or a placebo. Therefore, most research volunteers will not benefit directly from clinical trials, and are only helping advance scientific knowledge.
If you are interested in participating in a clinical trial or scientific study, make sure you can answer the following questions:
- What’s the trial/study about?
- What will you be asked to do?
- What risks might you face?
- Has an Institutional Review Board (a group of scientists, doctors, clergy and patient advocates that review and approve the detailed plan for every clinical trial) approved the study?
- Whom do you contact with questions, concerns or problems?
- Will you be informed about the progress and results of the study?
Protecting Research Volunteers
Because much of our field’s research takes the form of clinical trials, NAMI advocates that research involving human subjects must be in accordance with the highest scientific, medical and ethical standards. Further, these studies must protect the individuals and families who make this contribution to scientific progress.
Specifically, NAMI stresses that:
- Research subjects choose to participate in studies only after they understand the risks of being in the study as well as possible benefits. They (and, in many cases, their families) need to fully understand the study protocols as well as the risks and potential benefits of the research.
- Researchers fully explain what protections are in place for storage, maintenance and sharing of any data collected (including genetic samples).
- Researchers perform independent and ongoing evaluations of a research subject’s capacity to consent.
- Institutional Review Boards include people experiencing mental illness and/or family members.
- Individuals may withdraw from a study at any time without penalty.
- At the end of the study—or if a person withdraws participation prematurely—effective treatment and aftercare are ensured, as is feedback on study results.
- For genetic research, there should be clear information about the protections related to your privacy and how genetic information will be used and shared with other researchers.
Emerging Research to Watch
One of the more recent and complex areas of research is the area of genetics. Mental health conditions are complex and it’s unlikely that they’re caused by a single gene. Indications are that these conditions have poly-gene complexities, involving dozens or maybe even hundreds of genes—we just don’t know. Improving our understanding requires scientists to study and analyze genomes (maps of our genes) from willing donors to see if patterns emerge.
One example of genetic research is the All of Us project now underway by the National Institute of Health. This study involves gathering data from one million people living in the U.S. to help offer precision solutions to mental health conditions. More information on this project can be found here.
NAMI covers research updates and breakthroughs, like genetic research, in our online and print content. We also honor innovative work in the field of mental health research with the NAMI Scientific Research Award each year. In addition, NAMI collaborates with key research stakeholders and leading experts from academia, industry, government and private institutions to lead a unified call for better, more advanced treatment.
- To learn more about clinical trials, check out National Institute of Mental Health’s (NIMH) “Clinical Research Trials and You” Questions & Answers document.
- To learn more about studies related to mental health conditions, including where they are located and how to enroll, visit NIMH’s website. Remember that all participation in research is voluntary and not considered part of your treatment.
- To learn more about the what our genes can and cannot tell us about our mental health visit NIMH’s extensive web section on the topic.
- To learn more about the protection of research volunteers, visit these organizations: