Genetic Alliance Webinar Schedule
Genetic Alliance Webinars offer information and discussion on a variety of topics, including hot-button issues in genetics and advocacy, public policy, and organizational development. Genetic Alliance presents a new webinar at least once a month.
Children & Youth with Special Healthcare Needs
in Healthy People 2020: A Consumer Perspective
May 16, 2013, 3pm – 4pm EDT
Healthy People 2020 contains almost 600 objectives for improving the health of all Americans, and 100 of those objectives relate to children and youth with special healthcare needs (CYSHCN). To highlight some of these objectives and envision how the objectives might influence CYSHCN as they mature into adults, Genetic Alliance and Family Voices collaborated with the Division of Services for Children with Special Health Needs in the Health Resources and Services Administration’s Maternal and Child Health Bureau (MCHB) - which last year released Envision 2020, its strategic plan - to develop a family and consumer perspective on the national health promotion agenda and how it relates to CYSHCN and their families. By focusing on a small portion of the many community and organizational accomplishments related to children and youth with special healthcare needs (CYSHCN) and systems of care, we hope to generate discussions of the gaps that remain, as well as equip families and providers to better advocate and care for CYSHCN and their families. This webinar will present Envision 2020 as well as the Consumer Perspective document and demonstrate how Healthy People 2020 objectives can influence and provide direction for improving systems and services for individuals with special healthcare needs.
Presenters:
Bonnie Strickland - Director, Division of Services for Children with Special Health Needs, MCHB, HRSA
Diana Denboba - Branch Chief, Integrated Services, Division of Services for Children with Special Health Needs, MCHB, HRSA
Trish Thomas - Director of Diversity and Outreach, Family Voices
Vaughn Edelson - Assistant Director of Health Communications, Genetic Alliance
What about Privacy and Progress
in Whole Genome Sequencing?
Webinar Series
The Presidential Commission for the Study of Bioethical Issues recently released a report entitled Privacy and Progress in Whole Genome Sequencing. In short, it concludes that “to realize the enormous promise that whole genome sequencing holds for advancing clinical care and the greater public good, individual interests in privacy must be respected and secured”. In their words: “As the scientific community works to bring the cost of whole genome sequencing down from millions per test to less than the cost of many standard diagnostic tests today, the Commission recognizes that whole genome sequencing and its increased use in research and the clinic could yield major advances in health care. However it could also raise ethical dilemmas. The Commission offers a dozen timely proactive recommendations that will help craft policies that are flexible enough to ensure progress and responsive enough to protect privacy.”
Registries for All
Webinar Series
Registries for All (Reg4ALL) is an innovative new registry platform that aims to accelerate research and improve health for all. Reg4ALL users begin by answering simple and engaging questions about their health, and then set specific privacy settings that reflect exactly how confortable they are with sharing that information. Two exciting features make Reg4ALL unique. First, users can share as much or as little as they want with as many or as few people and institutions as they want – better still, their sharing preferences can be changed as frequently and quickly as their health or feelings about privacy change. Second, Reg4ALL users can set preferences that allow researchers or disease advocacy organizations to reach out to them with news about clinical trials or new programs. With this distinctive feature, Reg4ALL allows users a new type of control over their health data and future, provides researchers with an easier, faster system to recruit for medical research, and gives advocacy organizations more tools to grow and thrive.
We add new webinars throughout the year. Please stay tuned for outstanding new offerings. In the meantime, check out our archives for webinars you may have missed.
Watch our recent webinars
What about Privacy and Progress in Whole Genome Sequencing? Archives
Rec. 1 - Strong baseline protections while promoting data access and sharingApril 9, 2013
Recording
