Sandra Daack-Hirsch

What is the focus of your research? What questions are you trying to answer? What problems are you attempting to solve?

The long-term objective of my program of research is to translate scientific advances in genetics through devising strategies to communicate complex genetic information in order to better assist individuals, families, and clinicians utilize this information to affect positive health behavior change. In a study I am currently involved in, “Personal Perspective and Provider Communication of Genomic Risk for Type 2 Diabetes Mellitus,” I would like to learn more about how people who have a first degree relative with type 2 diabetes mellitus (T2DM) personalize their risk to develop it.

What led to your interest in this topic? 

For 20 years I was a clinical nurse specialist in genetics. In that role I provided genetic counseling and education to families whose child had a genetics condition. Today, we see an expanded use of genetic assessment tools (e.g., taking extensive family health histories and genetic tests), which should help us assist not only families with what we think of traditionally as genetic conditions, but also in the assessment of risk for common disease such as cancer, diabetes, and heart disease. In order for clinicians to successfully use genetic information to assist patients in managing their risk, I think we need to understand our patients better. I am interested in identifying family history and genomic literacy factors that contribute to health promotion and disease prevention patterns.

This study is significant because misunderstanding genetic risk given a positive family history for a disease may impede the use of genetic information in personal health promotion and disease prevention behaviors. If we identify misunderstandings and the factors that lead to them, appropriate, tailored education may contribute to positive health promotion decisions such as lifestyle modifications or adherence to screening recommendations. Researchers from the United Kingdom (Walter & Emery, 2005) proposed the model of familial risk perception to explain how people with a positive family history for a complex disease develop and manage their personal sense of genetic risk—the personalizing process. I will use their model to guide my study. I choose to focus on T2DM because it has a significant public health burden; family history is an established risk factor; relatives are aware of and accurately report affected family members; and primary and secondary interventions exist.

What impact (on citizens, practice environment, educational opportunities, funding, etc.) do you predict coming from this research?

There is a gap in our understanding of how people who are at an increased risk for complex diseases, due the positive family history for a particular disease, come to understand and manage behaviors to reduce their risk for disease. Understanding a person’s beliefs may facilitate effective collaboration with health care providers, and improve risk reduction education.

How does the research integrate into education/practice/service?

Successful completion of this project is directly relevant to practice and how we teach young clinicians in that it has the potential to improve day to day communication with their patients regarding genetic/genomic risk. Findings will also contribute to the science underlying interpretation of genomic risk information when patients and clinicians make decisions about participating in screening, disease prevention, or symptom management. Findings from this study will bring forth the individual’s perspective about genetic/genomic risk for a complex disease and lead to the development of a more patient-centered approach to communicate genetic risk information in the growing area of genomics and complex diseases. Developing better risk communication approaches will be the topic of future research studies.