Family data-sharing and ethical norms

Electronic medical records will provide an opportunity to realize the public health benefits of scientific discovery in genomics – through the collection, use, and sharing of family health history and genomic information. We are developing a Genome-Enabled Electronic Medical Record (GenE EMR) that embeds a family health history tool (Health Heritage) into electronic medical and personal health records and also incorporates genomic data into personalized risk assessments and recommendations for prevention and risk reduction. A significant feature of GenE EMR will be the ability to share records among family members. Understanding the social norms and perceived expectations of family members regarding family data-sharing is an important step in addressing the embedded ethical tensions that involve liberty and autonomy on one hand and responsibility and justice on the other. To understand the consumer perspective, we are conducting focus groups exploring perceptions of ethical tensions and social norms regarding family "sharing" in the new age of electronic medical records:

1. Should family sharing should be “opt-in” or “opt-out” and do perceptions differ based on whether one is the “giver” or “receiver” of information? 2. Is it fair to have public policy wherein some have access to significant family health information electronically and others do not? 3. What are perceived risks or harms relating to keeping or withholding information and potentially uneven access?

We will report on the focus group findings and reflect on how the new possibilities of electronic medical records and genomic information may challenge our current ethical norms.