NBS Public Comment June 22 2010

Date: June 23, 2010 To: Mary K. Wakefield, Administrator U.S. Department of Health and Human Services (HHS) Maternal and Child Health Bureau Health Resources and Services Administration 5600 Fishers Lane Parklawn Building, 18A-19 Rockville, MD 20857 From: Twila Brase, RN, PHN, President Citizens’ Council on Health Care (CCHC) www.healthcarefreedom.us RE: HHS Request for Public Comments on “Considerations and Recommendations for National Guidance Regarding the Retention and Use of Residual Dried Blood Spot Specimens after Newborn Screening,” – a Briefing Paper issued April 26, 2010 by HHS through the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. Public Comments on HHS Recommendations for Storage and Secondary Use of Newborn DNA Citizens’ Council on Health Care (CCHC) is a non-profit health care policy organization supporting patient and doctor freedom, medical innovation and the right to a confidential patient-doctor relationship. We submit the following comments on the Secretary’s Advisory Committee’s Recommendations for storage and secondary use of newborn blood specimens (DNA) under the following sub-headings: • Summary of Concerns • Consent Requirements Dismissed • Deception Supports DNA Dissection • Government Wants DNA on File • Trust & Transparency in Tatters • Why Consent is Critical – One Example • Risks, Realities & Rights • Conclusion Summary of Concerns The ...