I assumed the directorship of the Office of Research Integrity (ORI) March 29, 2023, after spending over 30 years working in academia. I took on the role of research integrity officer (RIO) at Johns Hopkins University School of Medicine in 2005, the same year the current regulation took effect.
I believe in research and in the critical role ORI plays in safeguarding research when allegations of research misconduct arise. I believe in the mission of ORI. Federally funded research affects all of us and we must insure there is a process in place when questions arise regarding that research. Public trust is essential.
I lost my mother in 2002 to multiple myeloma when she was not much older than I am today. She died two months after diagnosis and was told nothing could be done. Fast forward to today and there are many treatments available making this disease, once viewed as a certain death sentence, a chronic disease with treatments available to extend a patient’s lifespan. This is thanks to federally funded research that brought life-saving treatments from bench to the bedside. It was too late for my mom, but many others will have their mothers much longer thanks to the work done by the research community under the oversight and guidance provided by federal regulations.
I lost my sister in 2009 to amyotrophic lateral sclerosis (ALS) just five days after her 50th birthday. She left behind two children, ages 13 and 16 and a broken-hearted husband. Since Maureen’s death, new drug therapies have gone through clinical trials and are being used for treatment. I remain hopeful that a cure for ALS will be found in my lifetime.
I am here today thanks to federally funded research. I was diagnosed with breast cancer in 2014 and underwent chemotherapy, a double mastectomy, radiation, and a total of nine surgeries. I continue to take an aromatase inhibitor daily to prevent recurrence. These therapies, which are now standard of care, started as a federally funded research project and I am a testament to the positive impact.
I share these personal stories not for your pity. I write to demonstrate the importance of federally funded research and look for your comments on the notice for proposed rulemaking (NPRM) published October 6, 2023.
This is your opportunity to make an impact. I pledge to personally read each and every comment received.
To review the NPRM and leave your comment, click here.