July 31, 2018 at 08:35AM
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PRINCETON, N.J.–(BUSINESS WIRE)–Hu-manity.org,
the organization created to champion continuous choice and consent of
personal data for everyone, announces a collaboration with Bioethics
International, a non-profit organization dedicated to improving the
trustworthiness and patient-centricity of the healthcare innovation
sector through the operationalization of bioethics, to create the Human
Data Ethics Lab. The forward-thinking initiative will help develop
mindful and practical solutions to empower people to understand and
manage the value of the data they produce.
“We recognize this is an opportunity to strengthen ethical frameworks
around our personal data by considering how people and organizations
around the world would interact if each of us had the right to own our
personal data,” says David
Bray, Ph.D., President of Hu-manity.org. Dr. Bray explains, “We are
excited to forge this partnership with Bioethics International as they
have the infrastructure, competency and network to proactively prepare
individuals and organizations to think through future ethical situations
and ensure we pursue people-centered goals.”
This collaboration developed because of the unique role each partner
plays in the community. Hu-manity.org is empowering people to own and
control their personal data as property. Given this pioneering work,
Hu-manity.org is distinctively positioned to identify and escalate
ethical issues to the Human Data Ethics Lab. The Human Data Ethics Lab
will be a multi-stakeholder team of ethicists, academics, and patient
advocates selected by Bioethics International. This think-and-do lab
will create concrete solutions to the ethical challenges inherent in the
world of big data and those brought to the table by Hu-manity.org.
“This Human Data Ethics Lab will be designed to evolve with the needs of
our society,” says Jennifer
E. Miller, Ph.D., founder of Bioethics International and Assistant
Professor at Yale Medical School. Dr. Miller goes on to say, “It will
explore and test methods for advancing patient- and human-centricity in
the new world of big data and machine learning. One of the lab’s first
aims will be to address consent, management and ownership issues of
health data collected about people.”
Findings from the Human Data Ethics Lab are planned to be published
annually.
About Hu-manity.org
Hu-manity.org was designed to create a more equitable, pluralistic
society in which all us have choice and continuous consent regarding our
data. There are currently 10 Hu-manity.org Fellows, who embody a
diversity of expertise in areas including legal, finance, healthcare,
education and commerce. Hu-manity.org is both borderless and
non-political, seeking to match people passionate about data rights with
groups and projects using Hu-manity.co’s technology to provide choice
and continuous consent.
For more information, please visit www.hu-manity.org.
About Bioethics International
Bioethics International’s mission is to help transform the way we
understand, engage, and operationalize bioethics in the healthcare
innovation sector, to improve its trustworthiness and patient-centricity
and advance health. Currently, Bioethics International focuses on the
ethics and governance of how medicines and vaccines are researched,
developed, marketed and made accessible to patients around the world.
For more information, please visit www.bioethicsinternational.org.
Funding Disclosures
Hu-manity.org will provide an unrestricted grant to Bioethics
International to support the launch of the Human Data Ethics Lab.