Theresa Boyer is a first-year PhD student in the Department of Epidemiology at the Johns Hopkins Bloomberg School of Public Health. She received her MSPH from the Department of Population, Family and Reproductive Health at Johns Hopkins in 2022, where she was a recipient of the Maternal and Child Health Training Grant. She also holds a MS in Biotechnology with a concentration in Bioinformatics from Johns Hopkins. She received a BA in Art History and Gender Studies from Brown University. Theresa’s research interests include the social and biological drivers of adverse pregnancy outcomes and their propagation across the life course.
The Ethics of Meeting an Individual Through Big Data
When I receive a dataset, an individual is often turned into a number. This number may be something like Study ID 123 or Medical Encounter Number 123456, and I can use it to find out a host of information about an individual within the dataset. The individual becomes a data point that I use to generate and explore hypotheses.
But of course, this isn’t just a data point – this is a person! My data may capture this person on one of the best days of their life, such as the birth of a new baby, or one of the absolute worst days of their life, such as being admitted to the Intensive Care Unit after losing too much blood during their delivery. My data, a string of many 0s and 1s, holds the stories of real people with all the emotion and immense responsibility that accompanies this privilege.
As an epidemiologist, I believe one of the most fundamental rights that I owe study participants is to hold myself and my collaborators to the highest ethical standards when using data. This can mean having difficult conversations, including bringing it to others’ attention if data is not being stored or utilized for the intended, approved purposes.
What Do We Owe to Our Participants and the Public?
Several years ago, I was working late into the evening with a team to generate some final statistics for a paper that needed to be submitted for consideration in the journal by midnight. I finally finished my portion of the project, and I pressed “send” on the email containing the requested statistics. I headed to the kitchen for some well-deserved dinner. Halfway through my dinner, a gnawing feeling of self-doubt began to work its way into my stomach. I felt that I made a mistake – somewhere.
I rushed back upstairs and emailed the study team an urgent request to stop the manuscript submission until I figured out what I had done wrong. Upon closer inspection, I made several minor coding errors that I easily fixed before giving the team the all-clear to proceed with the submission.
Another crucial aspect of ethics within the public health space involves ensuring that our results are sound and reproducible. In a time when public health findings are under increased scrutiny, we owe it to our study participants and the public to produce valid and clear research findings.
I often think back to that minor coding mistake, knowing that no one would have ever known that I inverted some 0s and 1s, but I never regret holding myself to the highest ethical standards and producing high-quality research with the ultimate goal of improving maternal health on an individual and population-based level.
