Hot Topics in Genetics and AdvocacyArchive
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.
June 25, 2008:
Newborn Screening Financial, Ethical, Legal and Social Issues Project
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Join us when we present the Newborn Screening Financial, Ethical, Legal and Social Issues Project. This project is lead by the Hawaii Department of Health in collaboration with the Western States Regional Collaborative. The project includes interviews with parents who have gone through a false positive screen and surveys on newborn screening materials. Presenters:
Download session materials: |
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. Join us Wednesday May 21 2008 for a discussion about what is in the pipeline for newborn screening at the state and regional level. We will have presentations from the California Department of Public Health and the New York Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NY MAC). Presenters:
Download session materials: |
April 30, 2008: What’s the Buzz About False Positives?
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As States continue to expand the number of conditions screened for through newborn screening, questions arising around the rate of false positives and what can be done. What is a false positive result, how does it occur, and what is the follow up? Join us to discuss these questions and the issues around false positive screening, from terminology to actual incidence. Presenters:
Download session materials: |
April 23, 2008: Public Access: The Time is Now!
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A new law says: The Director of the National Institutes of Health shall require that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine’s PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication: Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law. Panelists will discuss the policy from a number of stakeholder points of view. Presenters:
Download session materials: |
February 27, 2008: Reimbursement for Genetic Tests
| Reimbursement was singled out as a major issue for industry, clinicians and patients at the Genetic Testing Summit in 2007. It is often characterized as an outdated system that stymies access and choice. This webinar provides an overview of problems with the system for both tests and drugs. Presenters offer suggestions for remedies. Presenters: Marc Williams - Intermountain Healthcare, presenting the Secretary’s Advisory Committee on Genetics, Health and Society’s Report: Coverage and Reimbursement of Genetics Tests and Services. Bruce Quinn - Foley Hoag, (formerly the Contractor Medical Director for the California Medicare Part B program) presenting his perspective on reimbursement for genetic tests. Sean Tunis - Center for Medical Technology Policy, will share his thoughts on improving the pathway to promising new medical technologies, including genetic testing. Download session materials: Listen to recording: .mp3, .wma Marc Williams: Coverage and Reimbursement of Genetic Tests and Services. Power point presentation [pdf] Bruce Quinn: Chasing the Horizon: Reimbursement for Genetic Tests. Power point presentation [pdf] Sean Tunis: Coverage of Molecular Diagnostics. Power point presentation [pdf] |
February 20, 2008:
Parental Perspective on Newborn Screening
| As States add more conditions to their newborn screening panels, it is vital that the range of parental attitudes are examined. Speakers Rachel Grob and John Adams speak on the different viewpoints parents have on newborn screening. Presenters: Rachel Grob - Associate Dean of Graduate Studies, Sarah Lawrence College John Adams - OZ Systems, Canadian Organization for Rare Disorders Download session materials: Listen to recording: .mp3, .wma Rachel Grob: Qualitative Experiences with Newborn Screening: Parent Perspectives on Family, Child-Raising, and Health Care Issues. Power point presentation [pdf] |
January 30, 2008:
An Alternative Model for Regulation of IVDMIA
| 2007 was an important year for genetic testing oversight. At the end of the year, Genetic Alliance, in collaboration with a number of other coalitions, patient groups and industry, proposed a model of oversight of IVDMIAs to FDA. This webinar: 1) Describes the basic issues; 2) Proposes an alternative model to the status quo; and 3) Offers commentary on the proposal. Presenters: Listen to recording: .mp3, .wma Paul Radensky: Laboratory Regulatory Initiative. Power point presentation [pdf] Gail Javitt: In Search of a Coherent Framework: Options for FDA Oversight of Genetic Tests. Food and Drug Law Journal. Article [pdf] |
January 23rd, 2008:
Making an Impact on Newborn Screening: Federal Meetings and New Projects
| This webinar is an introduction to the Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. The history of the Committee, the impact parent advocates have in this arena, and a new project in Iowa focused on understanding the perspectives of communities who traditionally do not participate in Newborn Screening were covered. Presenters: Penny Kyler - Health Resources and Services Administration Micki Gartzke - Hunter's Hope Foundation Kimberly Piper - Iowa Department of Public Health Andrea Williams - Children's Sickle Cell Foundation Download session materials: Listen to recording: .mp3, .wma Penny Kyler: Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. [pdf] Kimberly Piper: Iowa Family Participation Project. [pdf] |
December 17th, 2007:
Genetic Testing Summit Follow-Up Report
| Many stakeholders in the genetics community met for two days for Genetic Testing Summit to consider the entire pipeline of test development, commercialization, oversight and services. A number of important conclusions and action steps were recommended. Pesenter: Sharon Terry - Genetic Alliance Download session materials: Listen to recording: .mp3, .wma Genetic Testing Summit Report |
October 31st, 2007:
Electronic Medical Records: Why Advocates Should Take Note
| Participants learned about electronic health records systems: national happenings, examples of how they work, privacy and security issues, and how they may benefit patients and their families. Guest presenters: Marc Williams - Intermountain Healthcare Wendy Benz - Raising Special Kids Download session materials: Listen to recording: .mp3, .wma Marc Williams' presentation materials. Wendy Benz's presentation materials. |
| NIH is seeking public comment on a proposed policy for the creation of a centralized NIH genome wide association studies (GWAS) data repository. The proposed policy addresses data sharing and data access principles, intellectual property, and issues regarding the protection of research participants through all phases of GWAS. Teri Manolio and Laura Rodriguez of National Human Genome Research Institute (NHGRI) were the speakers. Download session materials: Listen to recording:.mp3, .wma |
September 26th, 2007:
Consumer Focused Newborn Screening
| This webinar covered the topic of newborn screening, including an introduction to the issues, information on Consumer Focused Newborn Screening projects at Genetic Alliance, and an update on the Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACHDGDNC) meeting. Presenter: Natasha Bonhomme - Genetic Alliance Download session materials: Listen to recording: .mp3, .wma Consumer Focused Newborn Screening [Web link] Consumer Focused Newborn Screening [PowerPoint] |
July 16th, 2007:
Genetic Testing Policy
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Genetics Day on the Hill and covered genetic testing policy. Guest presenter: Kathy Hudson - Genetics and Public Policy Center Download session materials: Listen to recording: .mp3, .wma Genetic Testing Policy [PowerPoint] |
June 27th, 2007:
Get Involved in Family Health History
| We discussed recent updates of the Community Centered Family Health History project and how to get involved. We also discussed an opportnity to partner with us in creating your own customized toolkit. |
September 13th, 2006:
Genetic Testing Policy and the Genetic Nondiscrimination Act
| This teleconference, part of Genetics Day on the Hill focused on how to prepare participants for an effective experience and communication with elected officials on key policy issues such as genetic testing and genetic nondiscrimination. Presenters: Dora L. Hughes, M.D., M.P.H., Legislative Assistant to Senator Barack Obama; Kathy Hudson, Ph.D., Director of the Genetics and Public Policy Center; Jennifer R. Leib, Associate Director of Governmental Relations and Public Policy for Affymetrix, Inc. Download session materials: Listen to recording: .mp3, .wma |
June 14th, 2006:
Genetic Alliance Family Health History Initiatives
| During this webinar, we discussed Genetic Alliance Family Health History Initiatives and how to get involved. Genetic Alliance is currently working to make community based family health history tools accessible. Participants talked about how using a broad definition of community increases the accessibility of public health projects, and how your disease-specific community can tailor existing materials to meet your needs. Download session materials: Listen to recording: .mp3, .wma CDC Public Pages on Family Health History [Web link] Genetic Alliance Family Health History Projects & Resources [Web link] |
April 5th, 2006:
Understanding CLIA
| This teleconference examined one manifestation of genetic testing regulation, the Clinical Laboratory Improvement Amendments (CLIA), and the impact CLIA will have on the testing of rare diseases. Speakers were Joe Boone and Bin Chen from the Centers for Disease Control and Prevention (CDC). Download session materials: The Role of CLIA in the Oversight of Genetic Testing [PowerPoint] |
February 8th, 2006:
A Presentation on Advocates Role in Research
| This webinar explored what roles advocates can play in the realm of genetics research. What are the barriers to research and how can they be overcome? How can you maximize the impact of what little research there is? How can you attract quality researchers and keep them coming back for more? Download session materials: BioBank Executive Summary [web link] |
For schedule of upcoming Genetic Alliance webinars, visit http://www.geneticalliance.org/strategies
For tools and information related to these sessions and others, visit the Genetic Alliance Resource Repository.
