During the first day of the 2019 Advancing Ethical Research Conference (AER19), I had the good fortune of hearing Janine Austin Clayton, MD, talk and was very impressed and grateful for her work dedicated to decreasing the injustice gap in research. She works at the Office of Research on Women’s Health (ORWH), an NIH organization that was created with the goal of finding answers on why certain diseases affect women more than men. She presented interesting data from Ho JY, et al, showing how the United States is behind when compared with other developed nations in life expectancy. This analysis showed that the disparity is for issues affecting people younger than 65 and that the opioid epidemic is a big factor in these figures. It was very surprising to hear that women are more impacted by the opioid epidemic than men.
She also discussed the maternal mortality rate for women in the United States (26.4) when compared to other developed nations (the UK at 9.2, and Finland at 3.8 as examples). The information that was not presented was that this mortality rate is on the rise, as in 1991 the United States had a mortality rate of 10.3. Even worse, the apparent increase seems in part a result of improved methods for capturing this data; in other words, the mortality rate has been high all along, potentially even higher than today, and it just wasn’t tracked as effectively. As presented by Dr. Clayton, a data piece that has remained invariable is the fact that women of color are even more likely to die from giving birth than white women.
As impactful as this data is, and despite the great work that the ORWH and others are doing in improving these issues for women, we know this data is not new. We are still one of the few countries without paid maternity leave and one that does not offer enough resources to help mothers after having a baby. We are a society deeply divided, one which does not offer universal healthcare when even poorer nations around the world do, with high rates of obesity and with a life expectancy that was in decline until last year. We are also a population that is constantly stressed, struggling to balance work and life. If we think that, on top of all these, 46% of households have both parents working with more women saying how hard is to balance everything they’re expected to balance when compared to men.
I was born in a developing nation (Ecuador), and as such, I am used to terrible statistics when discussing a mother’s health. I have had the first-hand experience in delivering the babies of 13- and 14-year-olds, and understand the power of education for women to advance their health and life expectancy. What still is baffling for me is to know that, unlike Ecuador, the United States has more resources to make significant changes and improve women’s health. This data should make us all mad and upset, and with a fire to encourage our government and employers to do more. Some have suggested that there could be a big impact if employers took more decisive action, and that could be very effective. We need a mindset change, to understand this is a crisis that impacts our mothers but also their families and our children. We should commit our anger to the purpose of demanding more from people that effectively create change.
Maria G. Davila MD, CCRC, MA (Bioethics), is the Associate Director for Emory University IRB. She joined the IRB in August 2010. Maria is the team leader of the QA and Education team, which is in charge of auditing Emory IRB approve research studies and reviewing reportable events applications. Her team is responsible for providing federal regulations and P&P education to the Emory research community, IRB Staff, and IRB members. Under Maria’s leadership, the IRB Education and QA team have developed several guidance documents and worksheets and started educational, monthly webinars to provide up-to-date information to the Emory research community.
Before joining the IRB, she worked as a research associate for the Department of Orthopaedics for six years. During this time, Maria worked in a diverse range of studies, going from minimal risk studies up to Phase I research trials; helped with the development of quality assurance procedures for their research projects; and was the microsurgery instructor for residents and fellows. Maria has a foreign medical degree from Ecuador and a Master’s in Bioethics at Emory University.
Members of PRIM&R’s Blog Squad and other guest contributors are valued members of our community willing to share their insights. The views expressed in their posts do not necessarily reflect those of PRIM&R or its employees.
PRIM&R’s 2020 Advancing Ethical Research Conference (AER20) will take place virtually. We will present AER20 as a series of shorter, half-day online events spread out over three weeks in December (December 1-2, December 8-9, December 15-16).