Advocacy, Education & Empowerment

First Feature

Genetic Alliance Celebrates Great Day for Translational Science!

Christopher P. Austin, M.D. is named Director of the National Center for Advancing Translational Sciences.

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# A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

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# A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

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Network

Meet Your Neighbors

The Secretary's Advisory Committee on Heritable Disorders in Newborns and Children works to reduce morbidity and mortality in newborns and children who have or are at risk for heritable disorders, such as sickle cell anemia, cystic fibrosis and hearing impairment. The committee advises the Secretary, U.S. Department of Health and Human Services on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards. The Committee recommends that every newborn screening program include a Uniform Screening Panel that screens for 31 core disorders and 26 secondary disorders; the disorders' selection was based on Newborn Screening: Towards a Uniform Screening Panel and System.

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Policy

Your Data Are Not a Product

A new, experimental bioethics protocol, the Portable Legal Consent for Common Genomics Research (PLC-GCR), provides a mechanism for researchers to use existing medical and genomic data from research participants in their experiments. Data collected in experiments involving people are tightly controlled, and access is highly restricted due to ethical and legal concerns.

The new PLC-GCR protocol attempts to shift the paradigm by allowing informed and obliging volunteers to provide their genomic and medical data to be publicly available for use by other researchers. Any data in the PLC-GCR database will be anonymized, and researchers who use the data must adhere to strict confidentiality principles to protect the identities of the volunteers.

Genetic Alliance will be using the PLC-GCR for the THAT’S MY DATA! project launching in late April – stay tuned!

Sage Bionetworks Congress

The 3rd Annual Sage Commons Congress, Building Better Models of Disease Together, was held April 20-21 in San Francisco. The Congress explored how early investments in technical and legal data sharing platforms are beginning to pay off in faster science, increased patient engagement, and disruptive projects that can shake up the entire pharmaceutical industry.

The Congress program included deep dives into the Synapse technical platform and Portable Legal Consent systems that together make data about individual research participants the key to large-scale disease research and the open science movement.

View all of the Congress sessions and Congress Unplugged!

New Federal Agency Helps the Aged and Disabled

The Obama Administration has created a new agency within the U.S. Department of Health and Human Services (HHS), the Administration for Community Living (ACL). This agency is tasked with aiding seniors and people with disabilities living in a community. The new agency ties together three other federal agencies, the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities.

The ACL seeks to encourage better access to support, and targets initiatives towards groups with specific disabilities. HHS hopes that the ACL will enhance the lives of those with disabilities and provide them with tools to get the help they need in healthcare, housing, employment, and education. ACL will also help them to participate and cultivate relationships with the community.

US Translational-Research Center Fund

The US National Center for Advancing Translational Sciences (NCATS) has awarded 17 grants to create artificial organs for drug screening. These complex mini-machines are generally the size of a microscope slide or smaller, and are often connected to all sorts of tubes and wires to help to mimic human physiology. A lung on a chip, for example, puts blood-vessel cells on one side of a membrane and lung-tissue cells on the other. Tiny pumps and vacuums model breathing and blood flow.