PROJECT NARRATIVE When Americans interact with everyday technology such as mobile applications and websites, they leave behind digital footprints that can reveal a great deal about individual health. The proposed research will define the emerging ?health-relevant digital footprint? and evaluate consumer preferences around use of information from inside and outside the health care system.
PUBLIC HEALTH RELEVANCE: This project will explore the ethical, social, and cultural issues of the American Indians in regards to genetic research. Engaging tribal leaders and relevant stakeholders such as scientists, clinicians, and policy makers on issues around genetic research will create a more complete understanding of these challenges and enable them to create policies that may permit greater participation by American Indians and their tribes.
This bill prohibits the adjustment of premium or contribution amounts based on genetic information; prohibits an insurer from requesting or requiring a genetic test of a member unless made pursuant to the Common Rule, equivalent federal regulations or any applicable administrative regulation for the protection of human subjects in research; prohibits the use of genetic information for underwriting purposes; prohibits the request, requirement, or purchase of genetic information by an insurer prior to an individual's enrollment under a plan; precludes insurers from requiring genetic info
Genomic data, including findings incidental to the purpose for which a study is undertaken, can contain information of use and importance to research subjects related to their health, lifestyle, and reproductive choices. A growing consensus of expert groups is that at least some information from genomic studies should be available to participants. It seems clear that return of results from genomic studies should and will require the informed consent of research subjects.