June 19th 2018 - 2pm-5.30pm - Hyatt Regency Cambridge - 575 Memorial Dr.

Defining the Future of Human Genome Data Security, Privacy and Consent

Large scale genomics studies are well underway on Cloud infrastructure. However, although the Cloud provides many conveniences for genomics research, it also raises concerns regarding loss of patient privacy resulting from security breaches or the identification of patients from sensitive bio-data and the resultant loss of patient trust. 

Robust and dynamic consent agreements with patients and research participants rely on trustworthy security and privacy measures, They are central to enabling all stakeholders access to the data needed to advance precision medicine. 

This meeting will bring a diverse set of stakeholders together to define the future of these complex, interrelated and business critical issues. 


  • Stacey Donnelly, Senior Director, Strategic Operations, The Broad Institute
  • Michael Braxenthaler, Global Head, Strategic Initiatives, Roche
  • Carrie Blout, Senior Genetic Counselor and Project Manager, Brigham and Women’s Hospital and Harvard Medical School
  • Moran Cabili, Program Manager, The Broad Institute
  • David Bick, Medical Director, The Smith Family Clinic for Genomics Medicine
  • Dave Bernick, Director, DevOps Data Science Programmer, Dana-Farber Cancer Institute
  • Jeantine E. Lunshof, Philosopher, Ethics Consultant, Department of Genetics - Church Lab, Harvard Medical School
  • Michael Hunter, SVP, Strategy and General Manager, US Operations, PetaGene
  • Shira Rockowitz, Genomics and Bioinformatics Lead, Research Computing, Boston Children's Hospital
  • Michelle Penny, Senior Director, Head of Computational Biology and Genomics, Biogen
  • Stephanie Hintzen, Bioinformatics System Programmer, Dana-Farber Cancer Institute
  • Matthew Lebo, Director, Bioinformatics, Brigham and Women's Hospital
  • Natasha Frank, Interim Clinical Chief, Genetics, Brigham and Women's Hospital
  • Gaurav Kaushik, Associate Director, Data Products & Strategy, Foundation Medicine
  • Taunton Paine, Senior Policy Analyst, Clinical and Healthcare Policy Division, Office of Science Policy, National Institutes of Health (NIH)
  • Ingrid Holm, Associate Professor of Pediatrics, Harvard Medical School
  • Piotr Sliz, Chief Research Information Officer, Boston Children's Hospital
  • David Thomas, Director of Cachexia Research & Therapeutic Development, The Broad Institute
  • Hilary Lemass, Data Privacy Manager, Genomics Medicine Ireland
  • Will Chen, VP Product Management and Business Development, Precision Medicine, Elsevier
  • Johnny Kung, Director of New Initiatives, Personal Genetics Education Project
  • Brigitte Raumann, Product Manager - Life Sciences, Globus Team, University of Chicago

Points of discussion:

  • How are attitudes changing towards data sharing, and how can patients and public be incentivized to participate in research?
  • How to create and use cloud solutions to share, anonymise and compute safely.
  • What does the future of data ownership look like? How human genome data security and privacy models can inform consent agreements.
  • The potential of blockchain solutions to manage consent and access. 
  • HIPAA, GDPR and Common Rule requirements including IT security, data access, and restrictions and responsibilities for working with sensitive patient information.
  • Determining responsibility to get the balance right between institutional administrator efforts and cloud providers.

Meeting output:

  • Best practices and necessary standards defined for protecting data i.e. for identity management, data security, privacy protection.
  • Wish list and solutions road map for progressive consent, ownership and incentives including ethical, legal and social implications of data sharing.
  • Platform road map for how privacy protecting layers can be integrated with bioinformatics pipelines, queries, statistical and machine learning tools, to encourage freer flow of data across silos and reduce complexities around patient consent.
  • Outline of challenges and solutions offered by the fast-evolving technologies that an enable data sharing.
  • How can a system be created that can incorporate changing rules? What parameters could be defined as flexible elements?