Now that data privacy laws have become more globally widespread, existing institutional systems for data aggregation have been slow to adapt to support general health research.
In this webinar, Luna’s Chief Information and Privacy Officer, Scott Kahn, explores the common framework of General Data Protection Regulation (GDPR) and related regulations and suggests a path forward through privacy-by-design research.
About Scott Kahn
Scott Kahn, PhD. is the Chief Information and Privacy Officer at Luna, a private investor-owned company founded in November 2017. The public benefit corporation is chartered to drive societal value through the aggregation and organization of genomic and health data at a scale and diversity rich enough to solve today’s greatest health challenges. LunaPBC founded LunaDNA, the world’s first community-owned health database that offers shares of ownership to health data contributors. Scott is integrating data privacy and security provisions that comply with GDPR and HIPAA at LunaDNA. Scott is also on the Board of Directors at Rady Children’s Institute for Genomic Medicine and was the former Chief Information Officer and Vice President Commercial, Enterprise Informatics at Illumina.
About Genetic Alliance
Genetic Alliance, a non-profit organization founded in 1986, is a leader in deploying high-tech and high-touch programs for individuals, families, and communities to transform health systems by being responsive to the real needs of people in their quest for health. The alliance is comprised of 10,000 organizations, 1,200 of which are disease and patient advocacy foundations, and include community health programs, employee wellness programs, local nonprofits, religious institutions, and community-specific programs to grow and expand their reach and mission.