Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management

Toward better governance of human genomic data

(2021) Kieran C. O’Doherty et al.   NATURE GENETICS

Rising to the challenge of bias in health care AI

(2021) Mildred K. Cho   NATURE MEDICINE

Genomics: data sharing needs an international code of conduct

(2020) Mark Phillips et al.   NATURE

Bringing Code to Data: Do Not Forget Governance

(2020) Christine Suver et al.   JOURNAL OF MEDICAL INTERNET RESEARCH

Dissecting racial bias in an algorithm used to manage the health of populations

(2019) Ziad Obermeyer et al.   SCIENCE

Simplifying research access to genomics and health data with Library Cards

(2018) Moran N. Cabili et al.   Scientific Data

Responsible sharing of biomedical data and biospecimens via the “Automatable Discovery and Access Matrix” (ADA-M)

(2018) J. Patrick Woolley et al.   npj Genomic Medicine

Registered access: authorizing data access

(2018) Stephanie O. M. Dyke et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Blockchain-based platforms for genomic data sharing: a de-centralized approach in response to the governance problems?

(2018) Mahsa Shabani   JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION

Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees?

(2017) Mahsa Shabani et al.   Biopreservation and Biobanking

Health Care Organizations and the Power of Procedure

(2016) Emily A. Largent   AMERICAN JOURNAL OF BIOETHICS

Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts

(2016) Mahsa Shabani et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

“You want the right amount of oversight”: interviews with data access committee members and experts on genomic data access

(2016) Mahsa Shabani et al.   GENETICS IN MEDICINE

Consent Codes: Upholding Standard Data Use Conditions

(2016) Stephanie O. M. Dyke et al.   PLoS Genetics

The FAIR Guiding Principles for scientific data management and stewardship

(2016) Mark D. Wilkinson et al.   Scientific Data

Controlled Access under Review: Improving the Governance of Genomic Data Access

(2015) Mahsa Shabani et al.   PLOS BIOLOGY

Big Data: Astronomical or Genomical?

(2015) Zachary D. Stephens et al.   PLOS BIOLOGY

A human rights approach to an international code of conduct for genomic and clinical data sharing

(2014) Bartha M. Knoppers et al.   HUMAN GENETICS

Identifying Personal Genomes by Surname Inference

(2013) M. Gymrek et al.   SCIENCE

Towards a Definition of an Algorithm

(2010) N. S. Yanofsky   JOURNAL OF LOGIC AND COMPUTATION