Online Program

Role of patient advocacy in public health screening for hereditary breast and ovarian cancer, lynch syndrome, and familial hypercholesterolemia

Tuesday, November 5, 2013

James O'Leary, BS, Chief Innovation Officer, Genetic Alliance, Washington, DC
Sabrina Ford, PhD, Department of Obstetrics, Gynecology & Reproductive Biology, Michigan State University, College of Human Medicine, East Lansing, MI
We often hear that, other than newborn screening programs, genetics isn't yet ready for prime time in public health practice. Yet the evidence is clear that strategies such as 'Cascade Screening' exist that can save lives and prevent disease. When an individual is diagnosed with an autosomal dominant condition, cascade screening allows the identification of other affected family members through testing. Targeted cascade screening has the potential to provide a higher rate of identification than general population screening. Applying what we know today in Hereditary Breast and Ovarian Cancer, Lynch Syndrome (otherwise known as Hereditary Nonpolyposis Colorectal Cancer), and Familial Hypercholesterolemia could help us identify the estimated two million individuals in the US population who have one of these three conditions, most of whom are unaware of their risk. Through screening, we can catch individuals before they develop cancer or heart disease and offer them preventive strategies.

And yet, our current public health and medical system is not set up to effectively reach family members and conduct screening, especially in instances where economic or cultural barriers exist. And, issues such as privacy, stigma, misinformation, and insufficient coverage are serious deterrents to the use of genetic testing. Because of this fact, innovative strategies must be explored that harness the strength of patients, providers, and public health practitioners. This session will explore existing patient advocacy-led initiatives to identify and screen at-risk family members and will describe ways in which these projects could be amplified through existing clinical and public health infrastructure.

Learning Areas:

Advocacy for health and health education
Implementation of health education strategies, interventions and programs
Other professions or practice related to public health
Planning of health education strategies, interventions, and programs
Public health or related public policy

Learning Objectives:
Explain the impact of screening for Hereditary Breast and Ovarian Cancer, Lynch Syndrome, and Familial Hypercholesterolemia List existing advocacy initiatives for these three conditions. Describe strategies to form partnerships among public health officials, clinicians, and patient advocates interested in implementing cascade screening.

Keyword(s): Genetics, Screening

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I hold a leadership position in a nonprofit organization that focuses on patient empowerment and advocacy in genetics and health. I have managed multiple grants to create public health education campaigns, improve the patient centered clinical care, and allow individuals to make effective health decisions. In addition, I am the past chair of the Genomics Forum of APHA.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.