The objective of this training and research project is to develop the candidate into an independent and interdisciplinary ELSI researcher, with the ability to intertwine qualitative empirical with normative approaches to issues in genetics and genomics.

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 project employs a multi-method, transdisciplinary approach that combines ethnographic participant- observation, interview research methods, ethical, legal, and public policy analyses. The two goals of the present project are 1) to identify the ethical, legal, and policy challenges that the field of psychiatric genomics will face when trying to translate the findings of large-scale GWAS into clinically useful information, and 2) to make evidence-based recommendations about how to address these challenges.

Precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person. The Precision Medicine Initiative (PMI) was recently launched by the NIH to accelerate the pace of discovery. Though initially focused on cancer, the PMI will eventually generate knowledge applicable to a range of diseases, including infectious diseases.

The volume of international research in sub Saharan Africa is increasing largely because of the continents unique high burden of diseases such as malaria, HIV and more recently non-communicable diseases. The continent also faces emerging global health challenges such as Ebola and Zika virus all of which will require testing of new medicines, medical devices or understanding the pathophysiology. Many studies now include complex research such as genetic testing.

As concerns for border security increase, policymakers are turning to genomics as a biometric for tracing individuals entering the country, identifying missing migrants' remains, processing refugee claims, and screening for human trafficking. Increasingly, genomic information is a part of legislation and policy as a universal and sustainable biometric. Genetic verification of claimed relationships is required for some refugees and proposed legislation would expand this practice.

Public Health Relevance Section Policies in the U.S. increasingly rely upon genomic information as a biometric to inform visa application processes, by verifying biological relationship claims or statehood claims, and broad DNA collection from non-criminals may help with missing persons, disaster victim, and terrorism investigations. The societal implications of these genomic applications are broad, with benefits and risks to the individuals undergoing testing, the communities in which they live, and the nation at large.