Trainee Events

Trainee Events

Several optional events are designed to engage ELSI Trainees

Trainee Lunch Sessions

  • At lunch on Monday and Wednesday tables will be set aside so that trainees can meet and network with plenary speakers and other ELSI research leaders (see below for details). Sign up here, tables will be limited to 10 on a first-come, first-serve basis .

Poster Walks

  • At both the Monday and Tuesday Poster Sessions trainees are welcome to participate in a thematic tour of selected posters led by experts in the field. Engage with your colleagues and join lively discussions on the latest research. (see below for details). Sign up here (one sign up being used for Trainee lunches and Poster Walks).

Trainee Evening Gathering

  • Monday evening, immediately following the Poster Session trainees are encouraged to join ELSI Research Leaders for a Social Gathering at Butchers and Bakers in the Exchange Center (just across Farmington Ave.).  Trainees will gather at the Poster Session for a Trainee Photograph prior to departing for the restaurant. Attendees of this event will individually cover food and drink costs.

Trainee Tables – Meet the Expert – Lunch Sessions

Sign up to join a lunch table of 10 for informal and stimulating discussions with the expert of your choice.  Lunch and learn about opportunities in ELSI research nationally and worldwide. Priority will be given to graduate students, fellows and post docs, but we welcome participation from all attendees. Sign up here. Please sign up by May 25, 2017.

 

Monday, June 5, 12:15 – 1:15 pm

Table 1: James Evans, MD, PhD

James Evans is the Bryson Distinguished Professor of Genetics and Medicine at The University of North Carolina at Chapel Hill. He directs Adult and Cancer Genetic Services and is Editor-in-Chief of Genetics in Medicine, the journal of the American College of Medical Genetics. Dr. Evans’s research focuses on cancer genetics, the use of new genomic analytic technologies and broad issues of how genetic information is used and perceived.

 Table 2: Pearl O’Rourke, MD

Pearl O’Rourke is the Director of Human Research Affairs at Partners HealthCare Systems in Boston and an Associate Professor of Pediatrics at Harvard Medical School. As the Director of Human Research Affairs, she is responsible for the systems that support the regulatory and ethical oversight of human research and the responsible conduct of research. She is also Chair of the Partners Healthcare System ESCRO (Embryonic Stem Cell Research Oversight) Committee. Dr. O’Rourke has also been involved in international medical care, serving in China and Indonesia with Project HOPE.  She has been very active with PRIMR, serving many years on the board as well as a term as Board Chair.

Table 3: ELSI 2.0 Collaboratory Table 

ELSI 2.0 is an international network for genomics and society research which aims to encourage the comparative study and discussion of the ethical, legal and social implications of human genome research across different cultures and communities. Learn more about what ELSI 2.0 does and offers – and how to become a part of it.

Table 4: NHGRI Division of Policy, Communications and Education (DPCE) Table

Learn about the work and opportunities at NHGRI’s DPCE to promote the integration and utilization of genomic knowledge to advance human health and society by engaging broad communities of stakeholders across the country.

 Table 5: NHGRI Division of Genomics and Society, ELSI Program Table

The place to ask your questions about ELSI research funding. The program fosters basic and applied research on the ethical, legal and social implications of genetic and genomic research for individuals, families and communities. The program supports workshops, research consortia and policy conferences related to these topics.

Table 6: The NHGRI Genomics and Society Working Group (GSWG) Table

The GSWG provides advice to the Advisory Council of NHGRI on short- and long-range planning and priority setting for Genomics and Society activities at the Institute, with particular emphasis on the ELSI Research Program.  Meet some of the GSWG members and learn more about their activities. 

Wednesday, June 7, 12:00 – 1:00 pm

Table 1: James Evans, MD, PhD

Dr. Evans is the Bryson Distinguished Professor of Genetics and Medicine at The University of North Carolina at Chapel Hill. He directs Adult and Cancer Genetic Services and is Editor-in-Chief of Genetics in Medicine, the journal of the American College of Medical Genetics. Dr. Evans’s research focuses on cancer genetics, the use of new genomic analytic technologies and broad issues of how genetic information is used and perceived.

 Table 2: Wylie Burke, MD, PhD

Wylie Burke is Professor and former Chair of the Department of Bioethics and Humanities at the University of Washington, Adjunct Professor of Medicine (Medical Genetics), and Member of the Fred Hutchinson Cancer Research Center.  Her work focuses on the ethical and policy implications of genetic information in research and health care. She founded the University of Washington Center for Genomics and Healthcare Equality, an NHGRI Center of Excellence in Ethical, Legal, and Social Implications (ELSI) Research; and co-directs the Northwest-Alaska Pharmacogenomics Research Network, a research partnership involving universities and tribal communities in Alaska, Montana and Washington.

Table 3. Alondra Nelson, PhD

Alondra Nelson is the inaugural Dean of Social Science and Professor of Sociology at Columbia University. An interdisciplinary social scientist, she has published widely on science, medicine, and social inequality. Her books include The Social Life of DNA: Race, Reparations, and Reconciliation after the Genome; Genetics and the Unsettled Past: The Collision of DNA, Race and History; and Body and Soul: The Black Panther Party and the Fight against Medical Discrimination. She has contributed to national policy discussions on inequality and about the social implications of new technologies, including artificial intelligence, big data, and human gene-editing. Nelson sits on the editorial boards of Social Studies of Science and Public Culture, and serves on the Board of Directors of the Data and Society Research Institute.

Table 4: ELSI 2.0 Table

ELSI 2.0 is an international network for genomics and society research which aims to encourage the comparative study and  discussion of the ethical,legal and social implications of human genome research across different cultures and communities. Learn more about what ELSI 2.0 does and offers – and how to become a part of it.

Table 5: NHGRI Division of Policy, Communications and Education (DPCE) Table

Learn about the work and opportunities at NHGRI’s DPCE to promote the integration and utilization of genomic knowledge to advance human health and society by engaging broad communities of stakeholders across the country.

Table 6: The NHGRI Genomics and Society Working Group (GSWG) Table

The GSWG provides advice to the Advisory Council of NHGRI on short- and long-range planning and priority setting for Genomics and Society activities at the Institute, with particular emphasis on the ELSI Research Program.  Meet some of the GSWG members and learn more about their activities. 

 


Poster Walks

There will be two walks of about 45 minutes during each of the 2-hour poster sessions on Monday and Tuesday. Each walk can accommodate 10 members, so sign up soon! Priority will be given to graduate students, fellows and post docs, but we welcome participation from all attendees. Sign up here. Please sign up by May 25, 2017.

Poster Walks 1 and 2

Monday, June 5 at 6 pm

  1. Return of Results: Led by Barbara Biesecker, PhD, MS, CGC

Dr. Biesecker is an Associate Investigator in the Social and Behavioral Research Branch, Head of the Genetic Services Unit, and Director of the JHU/NHGRI Genetic Counseling Training Program. Her research includes studies on return of results from hereditary breast and ovarian cancer testing; the impact of living with genetic conditions such as achondroplasia, Turner syndrome and Marfan syndrome; studies of coping and adaptation to genetic conditions, and outcomes of decisions to learn results from prenatal testing, multiplex common disease testing and, more recently, genome/exome sequencing. Most recently, she has studied participation in clinical trials for Duchenne muscular dystrophy and Fragile X syndrome. Dr. Biesecker and colleagues just completed two randomized controlled trials: 1. Comparing delivery modes for return of carrier results in a genome sequencing cohort, 2. Comparing consent protocols for participation in a genome sequencing study.

  1. Prenatal and Pediatric Genetics –  exploring new approaches and ELSI issues as prenatal and pediatric genetic testing expands:   Led by Dana Waring, MLA

Ms. Waring is the Education Director and Co-founder of the Personal Genetics Education Project (pgEd) at Harvard Medical School. Her work includes writing and teaching about ethical and social issues in genetics including privacy, disability and reproductive genetics. Ms. Waring develops curricula for use in secondary education that reflects the complexities and nuances of our increasing use of genetics in health care and in society.

Poster Walks 3 and 4

Tuesday, June 6 at 6 pm

  1. Biobanking Poster Walk –  exploring ELSI issues in biorepository research, with a particular focus on consent and data-sharing: Led by:  Kyle Brothers, MD, PhD

Dr. Brothers is an Assistant Professor in the Department of Pediatrics at the University of Louisville, where he is also affiliated with the Institute for Bioethics, Health Policy, and Law. His research focuses on the ethics of genetic research and the translation of genomic technologies into clinical care. Dr. Brothers is a pediatrician and practices pediatric primary care at University of Louisville Pediatrics Downtown Clinic. He is also an experienced clinical ethicist and serves as the chair for the ethics committee at Norton Children’s Hospital.

  1. Communication and Assessment of Genetic Information:  Led by Barbara Bernhardt, MS, LCGC

Ms. Bernhardt is a genetic counselor, Clinical Professor and social sciences researcher in the Division of Translational Medicine and Human Genetics at the Perelman School of Medicine of the University of Pennsylvania.   For over three decades, Ms. Bernhardt has conducted both qualitative and quantitative research exploring ethical and social issues relating to the diffusion of new genetic technologies, and the influence of the media, patients, providers, third party payers and clinical practice guidelines on the offering and utilization of genomic tests and services. Her current research projects include an investigation of the impact of the uncertainties of prenatal and pediatric microarray testing on patients and providers, and an evaluation of the offering of whole exome sequencing to children.  In her clinical work, Ms. Bernhardt has over 40 years of experience counseling patients in the context of complex decision-making in prenatal, pediatric and adult genetic clinics.