ELSI Research and the New NIH Data Management and Sharing (DMS) Policy Webinar

Dave Kaufman is a program director who joined the National Human Genome Research Institute (NHGRI) in May of 2014, after working as an NHGRI ELSI grantee for several years. He oversees a portfolio of research and career development grants related to the ethical, legal and social implications of genomic research. Dr. Kaufman serves as the primary ELSI advisor to the Clinical Sequencing Evidence-Generating Research (CSER) consortium and participates in a variety of ELSI-related trans-NHGRI and trans-NIH initiatives and programs, including a Citizen Science Working Group.

Currently, Dr. Kaufman focuses on ELSI Research Program grants related to Genomic Healthcare and the integration of genomic information and technologies into clinical care. He also focuses on big data and stakeholder engagement issues.

Dr. Nicole Lockhart came to National Human Genome Research Institute (NHGRI) in 2012 as a program director in the Division of Genomics and Society. Dr. Lockhart oversees a portfolio of research and career development grants related to the ethical, legal and social (ELSI) implications of genomic research. Dr. Lockhart also coordinates the Genomics and Society Working Group, a working group of the National Advisory Council for Human Genome Research. She participates in a variety of ELSI-related trans-NHGRI and trans-NIH initiatives and programs.

Currently, Dr. Lockhart focuses on ELSI Research Program grants and initiatives related to Genomic Research Design and Implementation, which identifies, documents, and develops approaches to address challenges related to genetic and genomic research.

Dr. Rene Sterling joined National Human Genome Research Institute (NHGRI) in June 2020 as a program director in the Division of Genomics and Society. She oversees a portfolio of research and career development grants related to the ethical, legal, and social implications (ELSI) of genomic research. Dr. Sterling also serves as an ELSI advisor on the Electronic Medical Records and Genomics (eMERGE) Genomic Risk Assessment and Management Network.

Her academic training is in sociology, healthcare administration, and health policy and management; and she completed a post-doctoral fellowship at one of NHGRI’s Centers for Excellence in ELSI Research (CEER), where she focused on public opinion, direct to consumer marketing and biobanking.

Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI). She spearheads NHGRI’s scientific data sharing policy development, oversight, and implementation. Ms. Ghanaim collaborates with international, NIH and grantee partners on data sharing and privacy policy issues. For the last three years, she has advised the NHGRI Genomic Data Science Analysis, Visualization and Informatics Lab-space (AnVIL) on policy matters. Within NHGRI, she holds a joint appointment in the Policy and Program Analysis Branch (PPAB), where she develops and implements other NHGRI programmatic policies, and promotes understanding of Human Subjects Research Regulations.