Public health genomics, ethics and policy: Whose voices, which policy?

Public health genomics is a potentially powerful tool for population health promotion, but realization depends on public trust to gain participation in genetic/genomic data aggregation (e.g. biobanks) and in applications. While general population benefits are foreseen, both highly individualized applications and discrimination are possible (personalized medicine, counseling, ‘genetic penalization'). The public faces technical developments bearing social risk (in research, privacy, access, application) mediated partially through policy processes. ‘Who will be at the table' reflects normative as well as technical judgments, values underlying collective social goods, goals and prudential means for their realization. In 2007 the HHS Secretary's Advisory Committee on Genetics, Health and Society solicited public comment on a draft report on opportunities and challenges of pharmacogenomics. Our content analysis indicates 53 of 58 comments derived from subject-matter experts with only 5 from the public at large. While multiple factors contribute, genomics policy discourse appears remote from public input despite calls for partnership approaches. The public's limited scientific knowledge may lead policy makers to rely almost exclusively on expert input overlooking the ordinary citizen's role in policy development: articulating values (distinct from technical judgments) informing the common good of their community - the normative ethos of democratic policy formation. Oregon's Geneforum advanced such a process for the Oregon Advisory Committee on Genetic Privacy and Research. We articulate a “Public Policy Partnership Model” using public values and expert knowledge in a collaborative environment whereby policy makers can reasonably hope to create effective genomic policy achieving publicly valued outcomes improving public health.