PROJECT NARRATIVE The goal of the biennial ELSI Congress is to provide a dedicated, regularly scheduled meeting for researchers focused on the ethical, legal and social implications of genetic and genomic research and its translation into clinical care.
The Qualitative Data Repository (QDR) is a dedicated archive for storing and sharing digital data collected via qualitative and multi-method research in the social sciences (with an initial focus on political science). QDR, funded by the National Science Foundation and hosted by the Center for Qualitative and Multi-Method Inquiry at Syracuse University, provides search tools, collects links to U.S. and international data archives, offers support for drafting data management plans, and accepts data deposits.
ICPSR is an international consortium of more than 750 academic institutions and research organizations that provides leadership and training in data access, curation, and methods of analysis for the social science research community. It maintains a data archive of more than 250,000 files of social and behavioral science research data.
Duke's Center for the Study of Public Genomics will gather and analyze information about the role of publication, data sharing, materials-sharing, patenting, database protection, and other practices that affect information flow in genomics research and development. Managing intellectual property and ensuring the preservation of a robust "scientific commons" could prove as difficult as or more so than the science and technology, and could have as large of an impact on what results are produced, who has access to them, and how fairly they are distributed.
This project will address the ethical, legal and social implications of the use of genetic testing as part of US immigration procedures for family reunification. Last year, approximately two-thirds of immigrants who came to the US as legal permanent residents were family sponsored under the family reunification provision. Under this provision a sponsor, who must be a US citizen or permanent resident, petitions to the US Citizenship and Immigration Services (USCIS) to bring his or her family members (spouse, children, parents or siblings) to the U.S.
Learning more about the human microbiome is likely to change the way medicine is practiced. It may also have implications for our society and our legal system and important implications for how we conceive and address the ethics of medicine and biomedical research.
One of the intended goals of the ELSI CEER program is to provide guidance on policy issues that arise from novel genetic and genomic science and applications. This focus, however, misses epigenetic processes. Epigenetics involves the point at which nature and nurture intersect via discrete environmentally imposed modifications to the genome. These modifications include DNA methylation, and their distribution across the genome creates cell-specific epigenomes that control cell-specific expression patterns.
Genomic information offers the opportunity for "personalized prevention" in both clinical practice and public health settings. To date, such efforts have focused primarily on chronic diseases and their behavioral risk factors. We propose an exploratory CEER to study the ethical, legal, social and policy (ELSP) issues arising in the novel and timely context of infectious disease.