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Exploring the Responsibility to Recontact

Description


Exploring the Responsibility to Recontact

As genetics and genomics researchers, we know that variant interpretations evolve frequently as the science advances, and that the strength of evidence behind a benign, pathogenic, or uncertain interpretation can change. When this happens, it can be difficult to know whether, and to what extent, there is a responsibility to recontact research participants when new findings emerge that suggest their genetic information should be interpreted differently.

In an effort to provide additional guidance, ASHG and eight partner organizations issued a position statement outlining this responsibility in the research context, which was published in April 2019 in The American Journal of Human Genetics.

Drs. Yvonne Bombard and Howard Levy, lead authors of the statement and former members of the ASHG Social Issues Committee, will lead a discussion about navigating the challenges that arise with recontacting, such as:

• Ethical issues
• Situational factors
• Informed consent and participant expectations
• Financial constraints and resource limitations

We hope you'll join us! 

Contributors

  • Yvonne Bombard, PhD

    Genomics Health Services Researcher and Scientist at the Li Ka Shing Knowledge Institute of St. Michael’s Hospital, Assistant Professor at the University of Toronto in the Institute of Health Policy Management and Evaluation

  • Howard Levy, MD, PhD

    Co-Chair, Johns Hopkins Medicine Patient/Family Centered Design Team, Associate Professor of Medicine

  • Leila Jamal, ScM, PhD

    Certified Genetic Counselor at the National Institute of Allergy and Infectious Diseases (NIAID) and an Affiliated Scholar in the NIH Bioethics Department

June 25, 2019
Tue 1:00 PM EDT

Duration 1H 0M

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