From: Watkins, Vanessa, S [mailto:[log in to unmask]] Sent: Thursday, November 08, 2012 3:09 PM To: Whitehead, Shona R. (HSC) Subject: Upcoming Video Debate - Newborn Screening Hello Shona, The Children's Mercy Hospital Bioethics Center is hosting two upcoming free webinars that may be of interest to your members. Dr. Bryce Heese of CMH indicated that you might be able to post this to your Heartland Genetics Collaborative members. We would be grateful if you could share information on the newborn screening webinar and the second webinar (Slow Codes/DNR) as appropriate with your group. Information is below and attached. What tests should be mandated for all newborns? A live webinar debate, Nov 27th, 12-1pm Controversies about newborn screening become ever more complex. In 2006, the American College of Medical Genetics recommended that every newborn in the United States be screened for 29 conditions. Members of the President's Council on Bioethics recommended caution. Gilbert Meilander was concerned that "Expanded newborn screening is essentially research carried out for the public good, not the good of the infants being screened." Carl Schneider argued that parents understood this and were willing to support such research. On November 27th, we invite you to join a live webinar in which two national experts on newborn screening will discuss the issues surrounding this complex and controversial public policy. Children's Mercy Bioethics Director John Lantos will moderate and our special guests will be: - Dr. Duane Alexander, former head of the National Institute of Child Health and Development, who supports expanded screening. He has written, "The old dogma cannot be allowed to stand in the way of developing effective treatments for these rare genetic disorders." - Dr. Lainie Ross, the Carolyn and Matthew Bucksbaum Professor of Clinical Ethics at The University of Chicago. Dr. Ross is more cautious. She has written, "Offering results on a large number of conditions for which there is limited or no evidence of benefit to affected children may cause harm to some children and families and is likely to be a poor use of scarce resources." This is a unique opportunity to hear two exceptionally thoughtful and well-informed pediatricians discuss the complex issues of newborn screening. The webinar will be free, but you must register at: https://cmhbioethics.webex.com/cmhbioethics/onstage/g.php?t=a&d=663063148. For more information on the CMH Bioethics Center and our debate series, visit our website - www.cmh.edu/cmbc<http://www.cmh.edu/cmbc>. -- Slow codes, show codes, and no-codes in neonatal intensive care A live webinar debate, Nov 29th, 12-1pm Every NICU or PICU doctor has faced the following situation: A baby is dying, slowly, of multisystem organ failure. The family insists that everything be done and will not agree to a DNR order. The doctors, nurses, chaplains and social workers have tried explaining the situation. The disagreement has become intractable. In such situations, doctors usually respond in one of three ways: 1) they sometimes continue discussions and try to convince the patient or family to agree to a DNR order; 2) they sometimes accede to the family wishes and do the CPR, even though they find it reprehensible to do so; and 3) they sometimes refuse to do CPR, explain this to the patient or family and, if disagreement persists, seek legal sanction to override family's choices. We have brought together two national experts in neonatal bioethics to discuss these situations. Children's Mercy Bioethics Director John Lantos, MD, will moderate and our special guests will be: - William Meadow, MD, PhD, Professor of Pediatrics and Assistant Director of the MacLean Center for Clinical Medical Ethics at The University of Chicago, who argues that, in some situations, there is a fourth possible response - one that allows for less than vigorous resuscitation - a "slow code" - without any explicit authorization from the family. - Annie Janvier, MD, PhD, Associate Professor of Pediatrics and Co-director of Pediatric Clinical Ethics at the University of Montreal, who argues that "...all resuscitations need to be taken seriously and performed in a consistent fashion every time.... performances and rituals are best left to priests, ministers and mullahs." They will debate and discuss different approaches to these difficult cases. The webinar will be free, but you must register at: https://cmhbioethics.webex.com/cmhbioethics/onstage/g.php?d=660663559&t=a. For more information on the CMH Bioethics Center and our debate series, visit our website - www.cmh.edu/cmbc<http://www.cmh.edu/cmbc>. -- Best, Vanessa Vanessa S. Watkins, MPH, FACHE Certificate Program Coordinator | Children's Mercy Bioethics Center 2401 Gillham Road | Kansas City, MO 64108 816-701-5285 (phone) | 816-701-5286 (fax) [log in to unmask]<mailto:[log in to unmask]> ________________________________ Electronic mail from Children's Mercy Hospitals and Clinics. This communication is intended only for the use of the addressee. It may contain information that is privileged or confidential under applicable law. If you are not the intended recipient or the agent of the recipient, you are hereby notified that any dissemination, copy or disclosure of this communication is strictly prohibited. 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