The lab will explore and test solutions for the ethical challenges of a new data economy, where individuals better manage and own their data.
Princeton, New Jersey – July 31st – (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.
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
Hu-manity.org will provide an unrestricted grant to Bioethics International to support the launch of the Human Data Ethics Lab.