Choosing to participate or not participate in a research study is an important personal decision that millions of people make each year. Before making that decision, it is important to learn about clinical trials and what it means to be a study participant. Often, it is helpful to talk to a physician, family member and friends before deciding to join a research study. The video below shows one participant's research story.
Children in Research
If you have a child being asked to voluntarily participate in a research study, Sophie’s Science Project – What is Medical Research? is an excellent resource to help explain research concepts for children.
Researchers at the Research Institute are involved in a broad variety of research activities, ranging from clinical trials investigating cutting-edge therapeutic interventions designed to improve our ability to diagnose and treat a variety of human diseases to fundamental studies in the areas of personalized medicine, medical genetics, population health, emerging infectious diseases, food safety, and rural safety and health.
Much of this research, however, would not be possible were it not for volunteers who agree to participate in these human subjects studies. The Research Institute is committed to ensuring that the rights and welfare of each research subject is protected. Should you be interested in enrolling in a research study, it is vitally important that you become familiar with your rights as a participant in human subjects research.
As a research subject, you have the right to:
- Be told the purpose of the research study, including why, when, where and for how long you will be involved;
- Be told exactly what will happen to you and whether any of the procedures, drugs or devices differ from those that would be used in standard practice;
- Be told about potential adverse side effects and/or potential discomforts for which you will be at risk by virtue of your participation in the research study;
- Be told if you can realistically expect any benefit from participating in the study, and if so, what the benefit might be;
- Be told what medical treatment is available if complications arise;
- Be told if other alternative treatment choices exist, and how those treatments might be better or worse than being in the study;
- Know how and to what extent your privacy will be protected;
- Ask questions or express concerns at any time, whether before agreeing to participate, during the course of the study, or after it is completed;
- Be free of pressure or undue influence when deciding if you want to participate or when debating whether to continue your participation in the study;
- Refuse to participate in the study, or to change your mind and withdraw from the study at any time, without risking your future care at Marshfield Clinic Health System or other benefits you would otherwise be entitled to receive;
- Receive a copy of the signed consent form, the purpose of which is to document the potential risks and benefits of the study, in addition to explaining the goal of the investigation and what is expected of participants
If you have questions
If at any time you feel your rights as a participant in human subjects research have been violated, you should address your concern immediately with the investigator conducting the research or with a Marshfield Clinic Health System Patient Advocate at 715-387-5994. The Patient Advocate will work with the Institutional Review Board to address the problem.
General questions, concerns or complaints about research or research participation may be addressed to Marshfield Clinic Health System's Institutional Review Board office at 1-800-782-8581, ext. 7-9163.