Beyond the Bloodspot: Meeting Materials

10:00 AM - Stakeholder Impact and Approaches
Engaging patients, clinicians, and other stakeholders in the manufacturing, policy, and service dialogue to envision a sustainable and responsible screening system.
Speaker:
Natasha Bonhomme, Genetic Alliance [recording]

10:15 AM - How are Clinical Questions Driving Expansion?
What are the clinical questions that should be driving the increase in the number of conditions screened? How is the process for condition expansion (state and national) incorporating clinical outcomes? Are there other examples of public health screenings derived from undefined clinical expectations?
Speakers:
Nancy Green, Columbia University  [presentation, recording]
David Kaufman, Genetics and Public Policy Center  [presentation, recording]
Q&A

11:15 AM - Technology: The Driver or the Passenger?
Is technology driving newborn screening or are newborn screening needs driving technology? What have we learned from the technology expansion early in this century?
Speakers:
Teresa Finitzo, Oz Systems [presentation, recording]
Dan Didier, Life Technologies [presentation, recording]
Vamsee Pamula, Advanced Liquid Logic Inc. [presentation, recording]
Frank Adamo, PerkinElmer [presentation, recording]
Q&A

1:00 PM - Public vs. Individual Interests
What consent models exist that balance public health objectives and individual rights? How does direct-to- consumer testing impact this balance? What happens when data are not pulled back into the public health system?
Speakers:
Carrie Blout, Johns Hopkins Medical Institutions [presentation, recording]
Ellen Wright Clayton, Vanderbilt University [presentation, recording]
Aaron Goldenberg, Case Western Reserve University [presentation, recording]
Q&A

2:00 PM - What can Whole Genome Sequencing Learn from Existing Population-Based Screening?
As the dialogue about what whole genome sequencing can bring to screening continues, what can be learned from established population-based screening programs? How do the experiences of these programs play into this next phase of clinical care?
Speakers:
Bartha Maria Knoppers, McGill University  [presentation, recording]
Robert C. Green, Harvard Medical School  [presentation, recording]
Anne Comeau, New England Newborn Screening Program / University of Massachusetts  [presentation, recording]
Q&A

3:00 PM - Testing and Screening Beyond Newborn Screening: How do Advances in Prenatal Testing Impact Screening of Newborns? 
How is the discussion about what should be detected during the newborn phase impacted by advances in prenatal screening and diagnosis? How can we connect the topics of screening and diagnosis across these parts of the life course?
Speakers:
Arthur Beaudet, Baylor College of Medicine [presentation, recording]
Siobhan Dolan, Albert Einstein College of Medicine / Montefiore Medical Center [presentation, recording]

3:45 PM - Neonatal Screening and Sequencing: The Future is Now 
How is the federal government investing in the future of screening? What are the emerging trends in technology and how are they connecting to clinical care?
Speakers :
Tiina Urv, National Institute of Child Health and Human Development  [presentation, recording]
Anastasia Wise, National Human Genome Research Institute

4:15-4:30 PM - Final Summary Discussion
Closing Remarks
Speaker:
Natasha Bonhomme, Genetic Alliance [recording]

Other Resources:

Combined Federal Campaign (CFC)
#80146
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008-2369
Tel: 202.966.5557 Fax: 202.966.8553
info@geneticalliance.org