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 current 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: