This blog post is part of our series on the Promoting Asthma Patient Engagement in Research (PAPER) project. The goal of the program is to increase awareness of asthma and research and to increase patient participation in research.
Some people are hesitant to participate in research. This may be because of fear of the unknown or from past stories. But today, patients have rights to protect them during research studies. Before you join a study, you will asked to sign an informed consent document.
What Is Informed Consent?
Informed consent gives you information about the study so you can decide if you want to enroll. It will include details about risks, benefits or alternatives. You have to sign the document before joining.
Even though you sign it, the informed consent document is not a contract of any kind. You can leave a study at any time for any reason.
Why Is Informed Consent Important to Me?
Research has come a long way in the past few decades. And as patients have become more involved, patient protections have improved too. There are some famous stories of research that happened before informed consent. Because of stories like these, research practices have changed to give more patient protection.
Tuskegee Trials: In the 1930s, the Alabama Public Health Service worked with the Tuskegee Institute to study the natural history of syphilis. The study was done on 600 African American men who were not given informed consent. Researchers told them they were being treated for “bad blood.”
But the men were not given the correct treatment for syphilis. In fact, the study was supposed to last 6 months, but went on for 40 years. While the men had agreed to participate, they were not given the right information about the study.
In 1947, doctors began treating syphilis with penicillin. But the researchers did not offer this to the men in the study. The study was deemed “ethically unjustified.” It was stopped in November 1972.
Henrietta Lacks: Henrietta Lacks is probably the most famous story about informed consent. Cells taken from her in the ’50s are still being used in research today.
Lacks, wife and mother of five, was diagnosed with cervical cancer. She went to Johns Hopkins Hospital for treatment. Cells from her biopsy were sent to a lab where they found her cells did not die after a few hours like most cells did. Instead, they doubled every day. This made them ideal for medical studies.
Lacks’ cells have been used for countless studies, including the creation of the polio vaccine. Her cells have benefited millions of people. But when Lacks died on Oct. 4, 1951, her family had no idea her cells were being used for research. The cells were taken and used without her consent. More than 20 years later, her family finally found out about Lacks’ impact.
How Is Research Different Now?
In addition to informed consent, the current research process includes many protections for those who participate. The government has strict rules and requirements for clinical studies to protect patients.
Researchers are also seeing the benefit of having patients actively involved in studies. There has never been a better time for patients and researchers to come together to improve quality of life for those with asthma.
Participate in the PAPER Project to Shape the Future of Asthma Research.
Be a part of patient-centered research to shape research and treatments that can impact the lives of millions of Americans with asthma. Participating is simple. Watch our collection of 11 short videos on understanding asthma and asthma research. Then take short surveys after each one to give us your feedback.
Together, we can influence the future of research and treatment for better quality of life for those with asthma!
This project is funded by the Patient-Centered Outcomes Research Institute (PCORI), contract #2207-AAFA.