Human genome data ‘should be open to all’

“A leading genomic scientist has called on people who have their DNA analysed to make the full results openly available “for the greater public good”. …While conceding that “open access to genome sequences is not for everyone”, he hoped that many people would donate their genomes openly to science once they understood the risks and benefits….”

Harvard University Privacy Tools Project

The Privacy Tools Project is a broad effort to advance a multidisciplinary understanding of data privacy issues and build computational, statistical, legal, and policy tools to help address these issues in a variety of contexts. It is a collaborative effort between Harvard’s Center for Research on Computation and Society, Institute for Quantitative Social ScienceBerkman Klein Center for Internet & Society, and Data Privacy Lab, and MIT Libraries’ Program on Information Science.

Our work is funded by the National Science Foundation, the Sloan Foundation, the US Bureau of the Census, and Google. Any opinions, findings, conclusions, or recommendations expressed on this website are those of the author(s) and do not necessarily reflect the views of our funders….”

DO NOT PUBLISH, or Sometimes, open data/open access not ideal – UC Berkeley Library News

“Some fields such as paleontology and archaeology have long maintained restrictions on the publication of site locations and promoted government policies and regulations to limit collection and trade in fossils, artefacts, and culturally sensitive and/or scientifically important material. Organizations such as the U.S. Forest Service do not disclose geospatial data in order to protect research sites. Other solutions include modification of research permits so that endangered species locations are not automatically uploaded into wildlife databases and masking such records on private land, as presently occurs in some states in the United States.

Is this relevant to any public health research? Other than personally identifiable information, what types of health data should not be made widely available?”

Sharing Data and Materials in Psychological Science – Apr 17, 2017

“Psychological Science is now introducing some minor changes designed to increase the frequency and ease with which editors and reviewers of submissions can access data and materials as part of the peer-review process. I anticipate that, in addition to enhancing the review process, these changes will further increase the percentage of Psychological Science articles for which researchers can quickly and easily access data and materials postpublication. The changes we are introducing are tweaks and nudges, not radical shifts. In the following, I explain the changes and why they are worth undertaking.”

Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US

Abstract:  Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived benefits, concerns, and information needs were also assessed. In this experimental survey, individuals from 11 US healthcare systems in the Electronic Medical Records and Genomics (eMERGE) Network were randomly allocated to one of three hypothetical scenarios: tiered consent and controlled data sharing; broad consent and controlled data sharing; or broad consent and open data sharing. Of 82,328 eligible individuals, exactly 13,000 (15.8%) completed the survey. Overall, 66% (95% CI: 63%–69%) of population-weighted respondents stated they would be willing to participate in a biobank; willingness and attitudes did not differ between respondents in the three scenarios. Willingness to participate was associated with self-identified white race, higher educational attainment, lower religiosity, perceiving more research benefits, fewer concerns, and fewer information needs. Most (86%, CI: 84%–87%) participants would want to know what would happen if a researcher misused their health information; fewer (51%, CI: 47%–55%) would worry about their privacy. The concern that the use of broad consent and open data sharing could adversely affect participant recruitment is not supported by these findings. Addressing potential participants’ concerns and information needs and building trust and relationships with communities may increase acceptance of broad consent and wide data sharing in biobank research.

Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US

Abstract:  Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived benefits, concerns, and information needs were also assessed. In this experimental survey, individuals from 11 US healthcare systems in the Electronic Medical Records and Genomics (eMERGE) Network were randomly allocated to one of three hypothetical scenarios: tiered consent and controlled data sharing; broad consent and controlled data sharing; or broad consent and open data sharing. Of 82,328 eligible individuals, exactly 13,000 (15.8%) completed the survey. Overall, 66% (95% CI: 63%–69%) of population-weighted respondents stated they would be willing to participate in a biobank; willingness and attitudes did not differ between respondents in the three scenarios. Willingness to participate was associated with self-identified white race, higher educational attainment, lower religiosity, perceiving more research benefits, fewer concerns, and fewer information needs. Most (86%, CI: 84%–87%) participants would want to know what would happen if a researcher misused their health information; fewer (51%, CI: 47%–55%) would worry about their privacy. The concern that the use of broad consent and open data sharing could adversely affect participant recruitment is not supported by these findings. Addressing potential participants’ concerns and information needs and building trust and relationships with communities may increase acceptance of broad consent and wide data sharing in biobank research.

DataTags

“There are many worthy purposes for sharing data widely. In research, data sharing enables replication and validation of scientific findings and maximizes return on research investment, so it is not surprising that sponsors and publishers expect or mandate the sharing of data where possible. In organizations, data sharing leads to insights on operations and opportunities to improve goods and services. However, data containing sensitive information about individuals or personal data collected under various agreements cannot be shared openly without appropriate safeguards. An extensive body of statutes, regulations, institutional policies, consent forms, data sharing agreements, and common practices govern how sensitive data should be used and disclosed in different contexts. Researchers, institutions and companies that manage and share data must interpret how the various legal requirements and other data privacy and security standards apply to their handling of a given dataset. DataTags helps data holders navigate these complex issues….”

Opening Doors with Open Data | UWire

“Stores of data are growing so quickly that we now create as much data in two days as the entirety of mankind did up until 2013. Now that we have the power to collect data, what are we doing with it?”

US Chaos and Open Science – Google Groups

“Had an interesting thing happen today with a response from a potential peer reviewer who declined to do a peer review because of concerns about US government oversight.

We carry out an open, named peer review at GigaScience, and had asked a researcher at a government research center (who has peer reviewed for us before), to review a new paper. The potential reviewer wrote back that in the current uncertainty in the US, as an employee of the government, he/she did not feel that he/she could agree to do an open peer review.

While there are no specific bans on releasing information by researchers in government organizations, there seems to be a sense of uncertainty about participating in open science activities. 

Open peer review, of course, already has an underlying fear of reprisal of some sort from grumpy authors who’s paper was rejected- but I had never heard it in the sense of a generalized fear of government reprisals.

This was very chilling to me- that researchers are considering what information they are willing to share out of concern of a government response….”

Open Data Privacy

“Cities today collect and store a wide range of data that may contain sensitive or identifiable information about residents. As cities embrace open data initiatives, more of this information is available to the public. While releasing data has many important benefits, sharing data comes with inherent risks to individual privacy: released data can reveal information about individuals that would otherwise not be public knowledge. In recent years, open data such as taxi trips, voter registration files, and police records have revealed information that many believe should not be released.

Effective data governance is a prerequisite for successful open data programs. The goal of this document is to codify responsible privacy-protective approaches and processes that could be adopted by cities and other government organizations that are publicly releasing data. Our report is organized around four recommendations:

  • Conduct risk-benefit analyses to inform the design and implementation of open data programs.
  • Consider privacy at each stage of the data lifecycle: collect, maintain, release, delete.
  • Develop operational structures and processes that codify privacy management widely throughout the City.
  • Emphasize public engagement and public priorities as essential aspects of data management programs.

Each chapter of this report is dedicated to one of these four recommendations, and provides fundamental context along with specific suggestions to carry them out. In particular, we provide case studies of best practices from numerous cities and a set of forms and tactics for cities to implement our recommendations. The Appendix synthesizes key elements of the report into an Open Data Privacy Toolkit that cities can use to manage privacy when releasing data….”