June 4, 2020
Research has helped make great strides for improving human health. Unfortunately, there are also well-known research abuses that occurred in the past.
The good news is ⎯ researchers have learned from these mistakes. They are now working in new ways to make sure patients and community voices are heard.
How did the story of Henrietta Lacks prompt important changes to how researchers work?
In 1951, Henrietta Lacks was diagnosed with cervical cancer. She was treated at Johns Hopkins Hospital in Baltimore, MD. Her cells were used for research without her consent. It was found that Mrs. Lacks’ cells did not die like most cells in the lab.
Since then, her cells have been used in many different research studies. Countless new medical products were developed based on research with these cells.
In 2010, a book called The Immortal Life of Henrietta Lacks was published. This book told the story of Mrs. Lacks and how this research abuse affected her family.
After the book was published, Johns Hopkins Medicine stated that the institution, “could have — and should have — done more to inform and work with members of Henrietta Lacks’ family out of respect for them, their privacy and their personal interests.”
Since then, Johns Hopkins Medicine has changed many practices. One important change is that members of the Lacks family now have a say in deciding how the cells are used.
How do communities and researchers work together now?
Today, many research institutions work closely with patients and communities. Their input helps scientists understand how the research they do affects people’s lives. Research is guided by the point-of-view of the people the research is intended to help. These relationships are one way to make sure history does not repeat itself. Continue reading to learn about the many safeguards are now in place to protect people who take part in research on COVID-19 and other diseases.
The official name of the virus that started a worldwide outbreak in late 2019 is “Severe Acute Respiratory Syndrome Coronavirus 2.” The abbreviation is SARS-CoV-2. When the virus infects someone, the diagnosis is called “Coronavirus Disease 2019.” The abbreviation is COVID-19. In COVID-19, ‘CO’ stands for ‘corona,’ ‘VI’ for ‘virus,’ and ‘D’ for disease.