Responsible, practical genomic data sharing that accelerates research | Nature Reviews Genetics

Abstract:  Data sharing anchors reproducible science, but expectations and best practices are often nebulous. Communities of funders, researchers and publishers continue to grapple with what should be required or encouraged. To illuminate the rationales for sharing data, the technical challenges and the social and cultural challenges, we consider the stakeholders in the scientific enterprise. In biomedical research, participants are key among those stakeholders. Ethical sharing requires considering both the value of research efforts and the privacy costs for participants. We discuss current best practices for various types of genomic data, as well as opportunities to promote ethical data sharing that accelerates science by aligning incentives.

 

As data-sharing becomes more crucial, agencies say industry can help with privacy issues

“Agencies like the Census Bureau want better commercial off-the-shelf (COTS) technologies for protecting data privacy and computation, so they can securely link datasets and make predictions about the coronavirus pandemic….

Agencies like the Census Bureau want better commercial off-the-shelf (COTS) technologies for protecting data privacy and computation, so they can securely link datasets and make predictions about the coronavirus pandemic….”

 

Assessing Open Access Audio – Full Text View – ClinicalTrials.gov

Abstract:  The medical encounter can be overwhelming in term of the amount of information discussed, its technical nature, and the anxiety it can generate. Easy access to a secure audio recording from any internet enabled device is an available low cost technology that allows patients to “revisit the visit” either alone or sharing with caretakers and family. It has been introduced and tested outside the VA with evidence that it increases patient recall and understanding and may even improve physician performance. Little is known, however, about whether and to what extent these effects lead to better outcomes, such as improved treatment plan adherence and chronic disease self-management. This study is a randomized controlled trial designed ascertain whether easy access to audio recordings of the medical visit improves patients perception that they understand and can manage their own care, and leads to a variety of improved outcomes, such as better blood pressure and diabetes control, and fewer emergency department visits and hospitalizations.

 

Privacy challenges and research opportunities for genomic data sharing | Nature Genetics

Abstract:  The sharing of genomic data holds great promise in advancing precision medicine and providing personalized treatments and other types of interventions. However, these opportunities come with privacy concerns, and data misuse could potentially lead to privacy infringement for individuals and their blood relatives. With the rapid growth and increased availability of genomic datasets, understanding the current genome privacy landscape and identifying the challenges in developing effective privacy-protecting solutions are imperative. In this work, we provide an overview of major privacy threats identified by the research community and examine the privacy challenges in the context of emerging direct-to-consumer genetic-testing applications. We additionally present general privacy-protection techniques for genomic data sharing and their potential applications in direct-to-consumer genomic testing and forensic analyses. Finally, we discuss limitations in current privacy-protection methods, highlight possible mitigation strategies and suggest future research opportunities for advancing genomic data sharing.

 

Ethical and privacy considerations for research using online fandom data | Transformative Works and Cultures

Abstract:  As online fandom continues to grow, so do the public data created by fan creations and interactions. With researchers and journalists regularly engaging with those data (and not always asking permission), many fans are concerned that their content might end up in front of the wrong audience, which could lead to privacy violations or even harassment from within or outside of fandom. To better understand fan perspectives on the collection and analysis of public data as a methodology, we conducted both an interview study and a survey to solicit responses that would help provide a broader understanding of fandom’s privacy norms as they relate to the ethical use of data. We use these findings to revisit and recommend best practices for working with public data within fandom.

 

Epidemiological data from the COVID-19 outbreak, real-time case information | Scientific Data

“Cases of a novel coronavirus were first reported in Wuhan, Hubei province, China, in December 2019 and have since spread across the world. Epidemiological studies have indicated human-to-human transmission in China and elsewhere. To aid the analysis and tracking of the COVID-19 epidemic we collected and curated individual-level data from national, provincial, and municipal health reports, as well as additional information from online reports. All data are geo-coded and, where available, include symptoms, key dates (date of onset, admission, and confirmation), and travel history. The generation of detailed, real-time, and robust data for emerging disease outbreaks is important and can help to generate robust evidence that will support and inform public health decision making.

The data are openly available and we will continue to curate the database as new information is made available….”

Epidemiological data from the COVID-19 outbreak, real-time case information | Scientific Data

“Cases of a novel coronavirus were first reported in Wuhan, Hubei province, China, in December 2019 and have since spread across the world. Epidemiological studies have indicated human-to-human transmission in China and elsewhere. To aid the analysis and tracking of the COVID-19 epidemic we collected and curated individual-level data from national, provincial, and municipal health reports, as well as additional information from online reports. All data are geo-coded and, where available, include symptoms, key dates (date of onset, admission, and confirmation), and travel history. The generation of detailed, real-time, and robust data for emerging disease outbreaks is important and can help to generate robust evidence that will support and inform public health decision making.

The data are openly available and we will continue to curate the database as new information is made available….”

UC Berkeley Library makes it easier to digitize collections responsibly with novel workflows and bold policy | UC Berkeley Library News

“If you’ve spent any time stoking your curiosity with the UC Berkeley Library’s new online Digital Collections website, you’ve likely discovered all types of treasures digitized from the Library’s collections. The Library has already scanned and made available a virtual mountain of materials, from a photo of folk icon Joan Baez singing in front of Sproul Hall in 1964, to (almost) the entire run of the Daily Californian student newspaper.

The effort is part of the Library’s moonshot goal of wanting to make its estimated 200 million items from its special collections (rare books, manuscripts, photographs, archives, and ephemera) available online for the world to discover and use. But there’s a catch: Before institutions can reproduce materials and publish them online for worldwide access, they have to sort out complicated legal and ethical questions — ones that often stop libraries and other cultural heritage organizations from being able to move forward in setting these treasures free.

The good news? It just got easier to navigate these challenges, thanks to newly released responsible access workflows developed by the Library, which stand to benefit not only UC Berkeley’s digitization efforts, but also those of cultural heritage institutions such as museums, archives, and libraries throughout the nation….”

OpenSAFELY

“OpenSAFELY is a new secure analytics platform for electronic health records in the NHS, created to deliver urgent results during the global COVID-19 emergency. It is now successfully delivering analyses across more than 24 million patients’ full pseudonymised primary care NHS records, with more to follow shortly. All our analytic software is open for security review, scientific review, and re-use. OpenSAFELY uses a new model for enhanced security and timely access to data: we don’t transport large volumes of potentially disclosive pseudonymised patient data off-site; instead, trusted analysts can run large scale computation across live pseudonymised patient records inside the data centre of the electronic health records software company. This pragmatic and secure approach has allowed us to deliver our first analyses in just five weeks from project start.”