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.

Preprints made Outlaws

“The Commission of Biochemical Editors of the International Union of Biochemistry is proposing to take firm and, it hopes, lethal steps against the Information Exchange Groups which have been organized, over the past four years, from the National Institutes of Health in the United States. At a meeting in Vienna a week ago, the editors of six principal journals agreed to propose to their editorial boards that in the future they would not accept articles or other communications previously circulated through the Information Exchange Groups….”

Preprints made Outlaws

“The Commission of Biochemical Editors of the International Union of Biochemistry is proposing to take firm and, it hopes, lethal steps against the Information Exchange Groups which have been organized, over the past four years, from the National Institutes of Health in the United States. At a meeting in Vienna a week ago, the editors of six principal journals agreed to propose to their editorial boards that in the future they would not accept articles or other communications previously circulated through the Information Exchange Groups….”

Predecessors of preprint servers

Abstract:  Although there was an early experiment in the 1960s with the central distribution of paper preprints in the biomedical sciences, these sciences have not been early adopters of electronic preprint servers. Some barriers to the development of a ‘preprint culture’ in the biomedical sciences are described. Multiple factors that, from the 1960s, fostered the transition from a paper-based preprint culture in high energy physics to an electronic one are also described. A new revolution in scientific publishing, in which journals come to be regarded as an overlay on electronic preprint databases, will probably overtake some areas of research much more quickly than others.

Predecessors of preprint servers

Abstract:  Although there was an early experiment in the 1960s with the central distribution of paper preprints in the biomedical sciences, these sciences have not been early adopters of electronic preprint servers. Some barriers to the development of a ‘preprint culture’ in the biomedical sciences are described. Multiple factors that, from the 1960s, fostered the transition from a paper-based preprint culture in high energy physics to an electronic one are also described. A new revolution in scientific publishing, in which journals come to be regarded as an overlay on electronic preprint databases, will probably overtake some areas of research much more quickly than others.

Transforming team-learning teaching cases for online platforms: scaling up an e-learning module development project to expand reach across Harvard and to public health professionals in field settings | Harvard Initiative for Learning and Teaching

“Awardees will extend the transformation of traditional to online cases across Harvard by developing a new e-module for delivering teaching cases on-line to public health professionals in field settings, and convening a cross-Harvard workshop to share best practices.

Building on the work of their 2016 Spark Grant, Dr. Austin and team will extend a prototype for transforming traditional teaching cases into e-learning modules by developing a new e-module designed for continuing professional education online platforms. The team will also convene a cross-Harvard workshop to provide a structured forum to share activities and solutions for taking traditional case-method teaching to online platforms….”

Scientists are getting proactive about self-corrections

“Journals pin corrections on scientific articles for all sorts of reasons — from the mundane, like minor typos and wording changes, to the significant, such as errors that warrant a detailed explanation.

But the process for correcting a published article can be needlessly burdensome and time-consuming, and stories abound of scientists trying to do the right thing, noting a minor error or update to their own work, but facing hurdles — from delays to flat out denials from journals.

Now, some researchers have decided to take matters into their own hands, using a comment feature on the widely used PubMed site. …”

Authors alerting readers via PubMed Commons | PubMed Commons Blog

“Journals can issue correction and errata notices to notify readers of errors and, as necessary, revise text and data in publications. Yet these processes can take time. Authors sometimes encounter obstacles to publishing corrections. Some authors use PubMed Commons to alert readers to issues or to refine language and interpretations. Correcting the record via journal notices is important, and it’s great to see authors add speed and transparency with post-publication updates….Journal corrections revise the version of record for a publication, and PubMed Commons does not replace that. But it does offer another way for authors to provide clarifications, point to interim and published corrections, and alert readers to errors quickly. And it’s good to see authors taking advantage of PubMed Commons to pass that information along to the community….”

Open Data – is it worth it for everyone? | Allan Williamson

“So last night’s open data forum made me think a little bit. Open data seems great and even almost imperative for fields with large volumes of data being collected, such as bioinformatics, social sciences, geography and population medicine. Access to large volumes of sanitized and known valid data could be a huge boon to researchers looking at similar endpoints to published studies or even just for highlighting interesting and different cues hidden within that data that researchers may have missed.

That’s all well and good for larger fields, but what about smaller ones? Many, maybe even most, researchers are working on a small scale, with small sample sizes and maybe even just collecting a limited amount of data. If all you have is a few Western blots, or a few physiological variables, when does developing the infrastructure to store and make available that data become worth it? In totality, if enough researchers make their data available it may be worth it because you might be able to collect a bunch of samples and through meta-analysis start drawing connections overall where individual studies may have been underpowered or simply not looking for a certain variable, but that’s a rather tenuous possibility at the moment.

For my field, I’m currently unconvinced. There’s too much inconsistency inherent in the systems we look at even on a population level to make it feasible to start pooling data, and the development of an infrastructure necessary to support open access to data likely exceeds the limited budget most researchers have. I’m curious what others think about their fields though”