Genomics and Society

Massively increased information capacity and recent advances in genomics have placed us on the brink of the age of “personalized” genomics. It is now possible to get detailed information about one's individual genome, and databases will soon enable comparative analyses form one individual genome to another, and well as within and between group analyses.  This initiative explores the social, legal, ethical, economic, institutional and political aspects of new developments in personalized genomics.  Questions of particular interest include:

• What are the implications of genomics for privacy, especially regarding access to medical insurance?
• What are the implications of personalized genomics for intellectual property?
• What are the implications of personalized genomics for personalized medicine, and bench to bedside research?
• What kinds of individual and group informed consent should be established before sequencing individual genomes?
• How should researchers and individuals deal with conditions that have weak correlations with particular genes, and / or late onset that might show up?
• Who should be responsible for (and should there be any limits on) researchers aggregating individual data into group data, especially if the groups reflect socially significant categories, such as gender, race, nation, sexual orientation, and disability?
• How can individuals assert and retain control of their individual data, especially given the impossibility of predicting the kinds of knowledge and uses to which it might be put?
• What are the current social and political uses of genomics and what role do they play in asserting identity and belonging in society (for example, how are genomics being used in the Native American community, to trace African ancestry among the descendents of slaves, or to discover and repatriate or reunite the "disappeared" and their relatives)?
• How can we develop language to talk about difference (individual and group) that is empowering rather than discriminatory?
• How can we develop language accurately to reflect the various kinds of causality and correlation that are likely to result from personalized genomics to a population that is neither well versed in the science nor the social science of genomics?
• What are the likely long-term effects of personalized genomics on the organization of medicine?
• How will personalized genomics play into ever-growing networks of global "medical tourism" - that is, how can regulatory and database collection and governance standards promulgated in one region be brought to harmonize with those of other regions, and how can we guard against techniques developed in one region being misused in regions of the world in which there are different or no regulatory and ethical standards?

For more information about this program, please contact STSC.