Hot Topics in Genetics and Advocacy Archive
The Hot Topics in Genetics and Advocacy series offers a forum to hear about exciting new programs and policies. From Newborn Screening to Genetic Testing Regulation to Family Health History, you'll hear from speakers who are working on some of the hottest topics in field.
2008
December 17, 2008 Integrating the Public Health Perspective Back into Newborn Screening
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Within the newborn screening community, there is diverse representation from multiple sectors such as biotechnology companies, clinicians, medical professionals, advocates, and policymakers. Given the increasing number of stakeholders, the presenters discuss the inclusion of public health perspectives in the newborn screening dialogue. This webinar focuses on discussing the importance of keeping the voice of public health professionals at the forefront of current and future conversations within newborn screening.
Presenters:
Beth Tarini - Assistant Professor, Child Health Evaluation & Research (CHEAR) Unit, University of Michigan
Sara Copeland - Assistant Professor in Medical Genetics, University of Iowa Hospitals and Clinics
Download session materials:
Integrating the Public Health Perspective Back into Newborn Screening [pdf]
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December 3, 2008 GINA Implementation: What's New?
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On October 10, 2008, the United States Departments of Labor, Health and Human Services, and Treasury issued a Request for Information (RFI) seeking input on a range of issues related to the Genetic Information Nondiscrimination Act of 2008 (GINA). The deadline for comments approaches on December 9. Hear more about the Act, its benefits and limitations, and get advice on how to submit your own comments.
Presenters:
Susannah Baruch - Law and Policy Director, Genetics and Public Policy Center at John Hopkins University
Jeremy Gruber - Legal Director, National Workrights Institute
Karen Pollitz - Research Professor, Georgetown Health Policy Institute
Download session materials:
Listen to recording: .mp3
<embed width="480" height="390" src="http://blip.tv/play/AfmyVgA" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true"></embed />
Susannah Baruch: Title I GINA RFI discussion [pdf]
Resources for Submittng Comments: RFI for Title I of GINA [pdf]
GINA Implementation Q&A [pdf]
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November 19, 2008: Nutrigenomics: An Overview
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This webinar provides an overview of nutrigenomics. Terms are defined, applications to personalized nutrition are discussed, and specific examples given. The impact of the limitations and promises of the science of nutrigenomics on consumers is explored.
Presenters:
Kathryn Camp - President, Genetic Metabolic Dietitians, International
Steven Yannicelli - Director of Science and Education, Nutricia North America
Download session materials:
Kathryn Camp, Steven Yannichelli: Nutrigenomics: An Overview [pdf]
<embed width="474" height="377" src="http://blip.tv/play/Afr7FgA" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true"></embed /> |
October 15, 2008: Bringing Genetic Screening to the Community
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Reviewing sickle cell's troubled history with community testing provides insight into establishing better practices and an opportunity for educating diverse groups in genetics, inheritance risk factors, family planning choices, and for those positive for traits, awareness of symptom prevention. This overview includes: policy and partnership development; training for screening, consenting and follow-up counseling; and critiques of community environments and outreach efforts. Discussion includes: lessons learned, enhancing capacity of CBOs, liability issues, and need for national guidelines. Supported by HRSA 05-027.
Presenters:
Robin Leger - University of Connecticut Health Center
Liza LeGrier - Citizens for Quality Sickle Cell Care, Inc.
Download session materials:
Robin R. Leger, Victoria Odesina, and E. Liza LeGrier: "Bringing Genetic Screening to the Community [pdf]
<embed width="480" height="390" allowfullscreen="true" allowscriptaccess="always" type="application/x-shockwave-flash" src="http://blip.tv/play/AfrjLAA"></embed /> |
June 25, 2008: Newborn Screening Financial, Ethical, Legal and Social Issues Project
May 21, 2008: What's New with Newborn Screening in the States?
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As states and regions adopts new policies around newborn screening, it is important to share upcoming programs and expansions with the rest of the nation. Listen to a discussion about what is in the pipeline for newborn screening at the state and regional level. View presentations from the California Department of Public Health and the New York Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NY MAC).
Presenters:
Fred Lorey - Acting Chief, Genetic Disease Screening Program, CA Dept Public Health
Katharine B. Harris - NYMAC Project Director, NYS Genetic Service Program Director
Download session materials:
Listen to recording: .mp3, .wma
Katharine B. Harris: Newborn Screening in the NYMAC Region. PowerPoint presentation [pdf]
Fred Lorey: What's new in California and Western States?. PowerPoint presentation [pdf]
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