2009 American College of Medical Genetics Clinical Genetics Meeting
March 27, 2009
Tampa Convention Center
333 S Franklin St
Tampa, FL 33602
Pew is no longer active in this line of work, but for more information, visit the Genetics & Public Policy Center Web site or visit the Genetics and Public Policy Centeron PewHealth.org.
The ACMG Annual Clinical Genetics Meeting continues to gain recognition as an outstanding educational and networking opportunity for medical and clinical genetics professionals who are providing comprehensive diagnostic, management and counseling services for patients with, or at risk for, genetically influenced health problems; laboratory directors and technicians providing genetic testing; researchers involved in the discovery of genetic disorders and treatments; and all healthcare and public health professionals with an interest in the rapidly evolving field of medical genetics and its integration into healthcare.
Friday, March 27, 2009 as part of the Education/Public Health/Legal/Ethical Platform Presentations,
08:00 - 10:00, Ballroom A
David Kaufman, Project Director, Genetics and Public Policy Center
Recent and prospective mothers’ attitudes and preferences regarding newborn genetic screening: a survey of 2,266 U.S. women.
Much of the work on public attitudes about genetic newborn screening programs comes from studies of high-risk parents and parents of affected children. As newborn screening expands, these programs may benefit from an understanding of the lay public’s knowledge, attitudes, and preferences. To this end, national representative samples of recent mothers and prospective mothers were surveyed about their experiences, expectations, and opinions on genetic newborn screening.
Joan Scott, Deputy Director, Genetics and Public Policy Center
Developing the Blueprint for a Genetic Testing Registry
More publicly accessible information is needed about what genetic tests are being offered, what indications tests are being offered for, and the analytical and clinical validity of such tests. Recently, the Secretary’s Advisory Committee on Genetics, Health, and Society recommended the creation of a mandatory genetic testing registry. We propose a “blueprint” for the registry in order to expedite its implementation. We describe the need for and benefit of establishing a registry, propose criteria for the inclusion of registrants and tests to the registry, define the categories of information that should be included for such tests, and recommend the federal agencies that should be tasked with development, implementation, and enforcement of the registry, as well as their sources of legal authority to do so.