Tag Archives: ELSI

Interviewed for Data & Society’s “Fairness in Precision Medicine” Report

I recently had the chance to participate in a research initiative called the Fairness in Precision Medicine project, led by the nonprofit organization Data & Society. The project examines the potential challenges we face in this emerging, data-driven era of medical research and healthcare.

The PI on the project, danah boyd, is a scholar whose work examines the intersection of technology and society. She’s been an inspiration to me since I read this Fast Company article called “Generation Flux” back in 2012. So needless to say, I was thrilled to learn about and get a chance to contribute to the project!

In their words:

“Supported by the Robert Wood Johnson Foundation, the report is the first in a new series of research projects at Data & Society focused on the future of health data.

The authors – Data & Society Postdoctoral Scholar Dr. Kadija Ferryman and Data & Society Researcher Mikaela Pitcan – present insights on emergent tensions in the field arising from extensive qualitative interviews with biomedical researchers, bioethicists, technologists, and patient advocates.”

For my contribution, I discussed the potential for unintended and negative impacts of highly personalized health information and recommendations, especially as big data and digital technologies are increasingly tapped to provide such information.

I was honored to be a contributor alongside my mentor at NCI, chief of the Health Communication & Informatics branch Brad Hesse, as well as University of Utah bioethicist Jim Tabery.

The Fairness in Precision Medicine report was published February 26, 2018. Learn more and download the (free) report here.

I was also interviewed for a related piece that explores on potential unintended consequences of conveying genetic information to patients. Read The Risks of Knowing Your Risks too!

What precision medicine projects am I working on? Visit my project page

Precision medicine communication: What could go wrong?

We’re entering an era of precision medicine—healthcare tailored to the individual, based on a range of biological and psychosocial factors—and with it comes both great enthusiasm and deep concerns.

Developments in genomic medicine and digital medicine are unfolding rapidly, and healthcare practitioners and communicators must quickly prepare to facilitate the implementation of precision medicine approaches (e.g., the All of Us Research Program). Most importantly, we must be ready to fully engage patients and the public in the process.

What are the potential challenges that could arise during precision medicine communication processes, and how can we address them?

These questions drive the focus of my current PhD work in health communication. Over the past 2 years, I’ve had the opportunity to deepen my understanding of precision medicine and exchange ideas with many people on the forefront of precision medicine implementation, first at the Frontiers in Precision Medicine symposium hosted at University of Utah, and then during a summer fellowship at the National Cancer Institute.

The first paper in this line of work has just been published in Journal of Health Communication: When personal feels invasive: Foreseeing challenges in precision medicine communication

If you’d like a copy of the full article, it’s available here.

Stay tuned for details on empirical projects launched in 2018-19 that pertain to communication of uncertainty in precision medicine. Updates will be posted here and on the ResearchGate project page.

If you’re interested in discussing or collaborating, please feel free to contact me on ResearchGate or via University of Utah.