12 posts tagged with "In the news"

We’re excited to share a new paper by Jonathan Lawson and Tom Conner, “GA4GH Data Passports: Proposing a New Technical Specification for Data Policy Representation,” now available on SSRN. This work introduces a proposed technical specification for Data Passports, a framework designed to streamline data use while upholding ethical provenance. By encoding these metadata as standardized, machine-readable “visas,” Data Passports enable faster, more secure, and interoperable access to research datasets.

Designed as a companion to the existing GA4GH Passports standard, this proposal outlines how institutions and data access committees can issue trusted assertions about a dataset. This approach reduces administrative burden and supports scalable, federated data governance. The paper also highlights future directions, including trust frameworks and expanded visa types, to further advance responsible and efficient data sharing.

​In his latest paper, Jonathan Lawson of the Broad Institute introduces View-Only Data Access Requests (VODAR), a novel approach designed to enhance the discoverability of controlled-access datasets. VODAR enables researchers to explore sensitive data in depth without compromising compliance or participant consent, addressing a significant barrier in genomic and biomedical research. This framework aims to streamline data access while upholding ethical standards, potentially accelerating scientific discovery. Read the full article here: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=5170433

​The “Experts Speak Forum: Implementation of the FAIR Principles in Biobanking Needs Fair Incentives” (DOI: 10.1089/bio.2024.0153) presents a collection of expert perspectives on the challenges and opportunities associated with applying the FAIR (Findable, Accessible, Interoperable, and Reusable) principles to biobanking. While originally developed for data management, the FAIR principles are increasingly relevant to biological samples. The contributors, including Jonathan Lawson, discuss the necessity of providing meaningful incentives to encourage the adoption of FAIR practices in biobanking, emphasizing that while the implementation presents challenges, it also offers significant opportunities for enhancing research quality and collaboration.​

“Ethical Governance for Genomic Data Science in the Cloud” (DOI: 10.1038/s41576-024-00789-9) addresses the ethical considerations and governance challenges associated with managing human genomic data on cloud platforms. While cloud computing offers significant advantages for genomic research, such as scalability and accessibility, it also raises concerns about data privacy, security, and equitable access. The authors, including Jonathan Lawson, advocate for adapting data governance frameworks to ensure transparency, protect research participants, and promote sustainable and equitable data sharing practices in the cloud-based genomic research landscape.​

The article titled “A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access” (DOI: 10.1186/s12910-024-01050-y) explores the perceptions of Data Access Committee (DAC) members regarding the adoption of Automated Decision Support (ADS) systems in genomic data governance. Through semi-structured interviews with 13 DAC members worldwide, the study identifies both support for and concerns about ADS implementation. While participants acknowledged the potential of ADS to enhance efficiency in tasks like data cataloging and user credential verification, they also expressed apprehensions about over-automation, diminished human oversight, and potential misalignment with institutional missions. The findings underscore the necessity for policies that balance technological advancements with ethical considerations, ensuring that ADS tools augment rather than replace human judgment in data access decisions. This study contributes to the discourse on integrating technology into data governance frameworks, emphasizing the importance of aligning such tools with institutional values and ethical standards.​

The article titled “Achieving Procedural Parity in Managing Access to Genomic and Related Health Data” (DOI: 10.1089/bio.2022.0205) addresses the disparities in data access procedures between traditional biobanks and emerging cloud-based genomic data platforms. The authors, including Jonathan Lawson, argue that while technological advancements have streamlined data sharing, policy frameworks have not kept pace, leading to inconsistencies in data access governance. They advocate for harmonized policies that align with technological capabilities to ensure equitable, efficient, and secure access to genomic and health-related data. The article emphasizes the need for policy evolution to fully leverage technologies that facilitate data sharing and drive scientific discovery.​

The article titled “Investigating the Roles and Responsibilities of Institutional Signing Officials After Data Sharing Policy Reform for Federally Funded Research in the United States: National Survey” (DOI: 10.2196/49822) examines the evolving role of institutional signing officials (SOs) in the context of new federal data sharing mandates, particularly those from the National Institutes of Health (NIH). Through a national survey of SOs across U.S. biomedical research institutions, the study reveals that while SOs are pivotal in ensuring compliance with data sharing policies, there is a lack of standardized institutional policies and clarity regarding their responsibilities. The findings underscore the necessity for updated and harmonized policies that align with technological advancements in data sharing, ensuring that SOs are adequately supported to facilitate ethical and efficient data governance.​

The article titled “Aligning NIH’s Existing Data Use Restrictions to the GA4GH Data Use Ontology” (DOI: 10.1016/j.xgen.2023.100308) examines the compatibility between the National Institutes of Health’s (NIH) existing data use limitations (DULs) and the Global Alliance for Genomics and Health (GA4GH) Data Use Ontology (DUO). The study found that 93% of NIH datasets’ DULs could be directly mapped to DUO terms, highlighting the potential for DUO to standardize data use restrictions across genomic datasets. By adopting DUO, data stewards can facilitate more efficient data discovery and access processes, ultimately accelerating biomedical research while ensuring compliance with participant consent.​

The article titled “Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management” (DOI: 10.1089/bio.2022.0042) explores the potential of Automated Decision Support (ADS) systems to enhance the efficiency, consistency, and fairness of data access processes in genomic research. The authors, including Jonathan Lawson, discuss how ADS systems, exemplified by the Global Alliance for Genomics and Health’s Data Use Ontology (DUO) and the Broad Institute’s Data Use Oversight System (DUOS), can standardize data access decisions by translating consent-based data use restrictions into machine-readable terms. This approach aims to alleviate the burden on Data Access Committees (DACs), reduce inconsistencies in decision-making, and expedite researchers’ access to data. The article also addresses the ethical, legal, and social implications of implementing ADS systems, emphasizing the need for policies that balance technological advancements with the protection of participant rights and the promotion of public trust in data governance.​

The article titled “Automating Justice: An Ethical Responsibility of Computational Bioethics” (DOI: 10.1080/15265161.2022.2075051) by Vasiliki Rahimzadeh, Jonathan Lawson, Jinyoung Baek, and Edward S. Dove, published in The American Journal of Bioethics, critically examines the ethical implications of integrating automated decision support systems into bioethical practices. The authors argue that while such technologies can enhance efficiency and consistency in decision-making, they also risk perpetuating existing biases and undermining justice if not carefully designed and implemented. They emphasize the necessity for computational bioethics to proactively address these challenges by ensuring that algorithms are transparent, accountable, and aligned with ethical principles. The article calls for a collaborative approach that combines technological innovation with rigorous ethical oversight to ensure that automation in bioethics serves to promote, rather than hinder, justice.​