One Participant’s Perspective

Tip Sheets

Sarah Everett knows just how risky research can be. Back in 2001, while participating in a clinical trial for an inhaled pulmonary medication, she had an adverse reaction that literally left her struggling to breathe. Yet she remains convinced that the risks of participating in research are more than offset by the potential benefits – to herself, her children, and others with chronic medical conditions.

“We need people to participate, but only if they are informed and protected,” Ms. Everett says. “Today’s treatments exist because of those who volunteered for past clinical trials. If people don’t participate, there will be no more advances for them or for their children.”

Ms. Everett has severe Alpha-1 Antitrypsin Deficiency, a rare, inherited protein deficiency that can lead to lung and liver disease. A former member of the Alpha-1 Foundation Board of Directors and a former member of the AAHRPP Board, Ms. Everett is a staunch advocate for safe, ethical research. She encourages people to “participate knowingly” and offers the follow recommendations:

  • Learn as much as you can about the clinical trial. Sit down with the researcher or his or her designee and ask about potential adverse reactions, the likelihood that they might occur – and the process for responding to them. This discussion should be part of the informed consent process. Don’t sign the informed consent documents unless you’re comfortable that your questions have been answered.
  • Consult with your doctor. Review the research information with your doctor and discuss it in light of your personal situation. Make sure both of you understand both the potential benefits and the potential risks.
  • If there’s a problem, be proactive. Be acutely aware of your own health and physical condition and any changes that occur during the clinical trial. One of the most common mistakes that participants make is to assume that “it’s nothing.” Instead, report symptoms or concerns immediately. Ask if any other participants are having the same symptoms.
  • Be realistic. Deep down, most of us want a cure – tomorrow. In fact, however, treatment advances typically come after years of clinical trials, involving hundreds and sometimes thousands of volunteers. Be hopeful, but temper that with patience and a dose of reality.
All information was provided by Sarah Everett, Esq., and published with her permission.