Advocacy, Education & Empowerment

First Feature

Free the Data!

The Supreme Court's landmark ruling that human genes are not patentable has set the stage for a new era of access to genetic information.

NEXT, share you BRCA test results or join the campaign to support freeing the data @ www.free-the-data.org

Read the press release here.

Sharon_foratv

Reg4All, a game changing project of Genetic Alliance, competes as a finalist in a Transforming Health Systems challenge!

VOTE NOW!

GA Pubs

Need Some New Reading Material?

Genetic Alliance publications are now on the NCBI Bookshelf!

Access our publications here.

Global Alliance

Creating a Global Alliance to
Enable Responsible Sharing
of Genomic and Clinical Data

Genetic Alliance and nearly 70 leading health care, research, and disease advocacy organizations in over 40 countries are dedicated to enabling secure sharing of genomic and clinical data.

Spotlight

Children and Youth with Special Healthcare Needs in Healthy People 2020

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 to create a family and consumer perspective on the national health promotion agenda and how it relates to children and youth with special healthcare needs and their families. By releasing this document we hope to generate discussions of the gaps that remain, as well as equip families and providers to better advocate and care for children and youth with special healthcare needs and their families.

Network

Meet Your Neighbors

Founded in 2006, Private Access, Inc. develops web-based applications that make it safe for individuals to allow confidential information, such as personal medical records, to be accessible over the Internet. Private Access' applications allow individuals to control who sees their personal health information; help researchers find qualified clinical trials and research study subjects; help nonprofit organizations identify meaningful trials to share with others; and offer solutions for managing medical records requests for both patients and providers.

Become a "neighbor"!
View our neighbor archive

Policy

Newborn Screening Saves Lives Reauthorization Act

On Wednesday March 20, 2013 Representatives Lucille Roybal-Allard (D-CA) and Mike Simpson (R-ID) introduced H.R. 2181,Newborn Screening Saves Lives Reauthorization Act legislation to ensure that children born in the US continue to receive comprehensive and effective screenings. The Newborn Screening Saves Lives Reauthorization Act will continue a number of national programs in place to support and improve newborn screening including: systematic evidence-based and peer-reviewed process of determining the federal Recommended Uniform Screening Panel, federal programs that provide assistance to states to improve and expand their newborn screening programs, quality assurance and surveillance efforts, and support parent and provider education through the Clearinghouse of Newborn Screening Information known as Baby's First Test.

Registries For ALL

CEO Sharon F. Terry introducesReg4ALL, a community of people storing and sharing information about themselves and their health in order to accelerate research and improve health. Reg4ALL allows communities to engage in biomedical research. Based on the privacy preferences and individual sets, researchers can access an individual’s health data – allowing all of us to contribute to the creation of medical breakthroughs and spark health innovation for all. Genetic Alliance has partnered with Private Access, which has a vision for a healthcare community that supports every individual's unique need for privacy and care. PA has vested interest in ensuring that individuals have access to their health information and can choose who can see it and can use it. The mechanism of the consent form is overburden – let's move to fair information practice.

Helping Provide Better Informed Decisions

The Patient-Centered Outcomes Research Instituteis authorized by Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.

What about Privacy and Progress in Whole Genome Sequencing?
A year-long webinar series

The Presidential Commission for the Study of Bioethical Issues recently released a report entitled Privacy and Progress in Whole Genome Sequencing . Genetic Alliance offers this series of monthly webinars, on the second Tuesday of each month at noon, beginning in February 2013 and ending in December. This year-long series will use the report structure as the basis for discussion. We’ll explore each recommendation, look for practical applications, and consider what else might be needed to realize the fruit of whole genome sequencing and respect privacy. All webinars are free of charge and are also archived for later viewing.

Learn More and Register