Skip to main content

Harvesting the benefits of genomics requires a new kind of transdisciplinary cooperation. Over the next three years, we will create the Center for Transdisciplinary ELSI Research in Translational Genomics (CT2G) to address key ELSI questions in translational research. The proposed Center brings together the unique resources of Kaiser Permanente Northern California (KPNC), including its Division of Research, and the University of California, San Francisco (UCSF), including the Hastings College of the Law Consortium on Law, Science & Health Policy.

This application proposes the establishment of a Center for Research on the Ethical, Legal and Social Implications of Psychiatric, Neurologic and Behavioral (PNB) Genetics at Columbia University Medical Center (CUMC). Since April 2010, we have been funded under a P20 Developing Center grant to create the infrastructure and begin development of such a Center.

This application proposes the continuation of a Center for Research on the Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral (PNB) Genetics at Columbia University Medical Center (CUMC), in collaboration with The Hastings Center. We have been funded since April 2010, initially under a developing center award and since 2013 as a full Center of Excellence in ELSI Research (CEER).

Despite the vast diversity of its populations, genetic studies in Africa have been limited. African populations, Malians in particular, have a high rate of intra-ethnic and consanguineous marriage, resulting in increased prevalence of autosomal recessive diseases. Family-based genetic studies can be limited in developed countries due to small sib ships. The average fertility rate in Mali is over 6 births per woman, offering a unique opportunity to find new disease genes or mutations that can then be studied in other populations.

This application is in response to PAR-13-027, International Research Ethics Education and Curriculum Development Award. The proposed project builds on an existing relationship in biomedical research capacity- building and training between the University of Pennsylvania (Penn) and two Guatemalan universities, the Universidad de San Carlos de Guatemala (USAC), the country's premier public university, and the Universidad Francisco Marroquin (UFM).

The prevailing model for ethical review of multicenter clinical trials is a distributed system of reviews conducted by the Institutional Review Board (IRB) of each institution engaged in the conduct of the trial. Conducting multiple reviews of a single protocol can delay the commencement of multicenter research and delay patient access to potentially beneficial treatments.

American Indian and Alaska Natives (AIAN) face glaring health disparities, and AIAN-specific research lags behind other racial and ethnic data in addressing AIAN health concerns. Engaging AIAN community members in the research process can reduce research mistrust, increase scientific rigor, and expose more AIAN to research both as participants and potentially as future scholars. A significant barrier to community engaged research (CEnR), however, is the absence of culturally relevant human subject's research ethics education for community partners.

established countries in the Middle East and North Africa (MENA) region with a high per-capita university education and progressive research agenda. It is also the hub for pharmaceutical drug development with over 20 companies generating generic drugs and exporting it to the region and globally. Jordanian pharmaceutical companies involve 7 Contract Research Organizations (CROs) in Jordan to conduct clinical drug trial and related human research.

Many national and international public and private initiatives are forming to collect and share data on a large scale for research and clinical use. Collectively, these efforts may lead to the creation of a medical information commons, a networked environment in which diverse sources of health, medical, and genomic data on large populations become widely shared resources.

With the dramatic reduction in the cost of whole genome sequencing (WGS), genomic data are becoming increasingly available and have the potential to advance public health and promote personalized medicine. However, human genomic data usually carry sensitive personal information making data owners cautious about sharing it and genomic privacy is emerging as a big challenge for the entire biomedical community. In this proposal, we will develop novel methods for genomic privacy protection, which will facilitate genomic research.