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(US) Safeguards for human studies can’t cope with big data – Nature (Nathaniel Raymond | April 2019)0

Posted by Admin in on April 19, 2019
 

Forty years on from a foundational report on how to protect people participating in research, cracks are showing, warns Nathaniel Raymond.

One of the primary documents aiming to protect human research participants was published in the US Federal Register 40 years ago this week. The Belmont Report was commissioned by Congress in the wake of the notorious Tuskegee syphilis study, in which researchers withheld treatment from African American men for years and observed how the disease caused blindness, heart disease, dementia and, in some cases, death.

This item obviously relates very specifically to the origins of the US human research ethics arrangements and the operation of IRBs, but the questions it poses are salient to Australasia.  The oft repeated statement: “But the information is already published and so is in the public domain and so is exempt”.  Is no longer helpful. We have provided a list of related items.

The Belmont Report lays out core principles now generally required for human research to be considered ethical. Although technically governing only US federally supported research, its influence reverberates across academia and industry globally. Before academics with US government funding can begin research involving humans, their institutional review boards (IRBs) must determine that the studies comply with regulation largely derived from a document that was written more than a decade before the World Wide Web and nearly a quarter of a century before Facebook.
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It is past time for a Belmont 2.0. We should not be asking those tasked with protecting human participants to single-handedly identify and contend with the implications of the digital revolution. Technological progress, including machine learning, data analytics and artificial intelligence, has altered the potential risks of research in ways that the authors of the first Belmont report could not have predicted. For example, Muslim cab drivers can be identified from patterns indicating that they stop to pray; the Ugandan government can try to identify gay men from their social-media habits; and researchers can monitor and influence individuals’ behaviour online without enrolling them in a study.
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Whitepaper: Practical challenges for researchers in data sharing (David Stuart, et al | September 2018)0

Posted by Admin in on March 4, 2019
 

Whitepaper, survey data and infographic on figshare.com

In one of the largest surveys of researchers about research data (with over 7,700 respondents), Springer Nature finds widespread data sharing associated with published works and a desire from researchers that their data are discoverable.

Foreword

We are in the midst of progress, and potentially exciting change, for open science and open access to research data. The world’s funders are increasingly mandating good data practice, including data management plans and data sharing, and recognising the need for global collaboration on infrastructure and best practice. Across the research community, momentum is gathering in policy, strategy and working groups to achieve a future where research data are widely Findable, Accessible, Interoperable and Reusable (FAIR).

Open science should be about opening up all areas of research. Open access to research data can help speed the pace of discovery and deliver more value for funded research by enabling reuse and reducing duplication. The evidence is there that open data and good data management makes research studies more productive, more likely to be cited and unlocks innovation for the good of society including unexpected new discoveries and economic benefit…

Stuart, D., Grace Baynes, S., Hrynaszkiewicz, I., Allin, K., Penny, D., Lucraft, M & Astell, M. (2018) Whitepaper: Practical challenges for researchers in data sharing. Springer nature
Figshare: https://figshare.com/articles/Whitepaper_Practical_challenges_for_researchers_in_data_sharing/5975011/1
Publisher (Includes media release): https://www.springernature.com/gp/open-research/open-data/practical-challenges-white-paper

The main obstacles to better research data management and sharing are cultural. But change is in our hands – LSE Blog (Marta Teperek and Alastair Dunning | November 2018)0

Posted by Admin in on December 7, 2018
 

This blog post is a summary of Marta Teperek’s presentation at today’s Better Science through Better Data 2018 event.

By now, it’s probably difficult to find a researcher who hasn’t heard of journal requirements for sharing research data supporting publications. Or a researcher who hasn’t heard of funder requirements for data management plans. Or of institutional policies for data management and sharing. That’s a lot of requirements! Especially considering data management is just one set of guidelines researchers need to comply with (on top of doing their own competitive research, of course).

All of these requirements are in place for good reasons. Those who are familiar with the research reproducibility crisis and understand that missing data and code is one of the main reasons for it need no convincing of this. Still, complying with the various data policies is not easy; it requires time and effort from researchers. And not all researchers have the knowledge and skills to professionally manage and share their research data. Some might even wonder what exactly their research data is (or how to find it).

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Was it Ethical for Dropbox to Share Customer Data with Scientists? – Wired (Emily Dreyfuss | July 2018)0

Posted by Admin in on September 18, 2018
 

FOR THE PAST two years, researchers at Northwestern University have been analyzing the habits of tens of thousands of scientists—using Dropbox. Looking at data about academics’ folder-sharing habits, they found the most successful scientists share some collaboration behaviors in common. And on Friday, they published their results in an article for the Harvard Business Review.

Another ‘good’ story about digital data, privacy and consent. If we were on the reviewing research ethics committee we would have lots of questions about anonymisation. Especially with regard to identifying information within text and that’s without even thinking about identification by inference and internal identification (even if we are only talking about the research team having access to the data).  And then there’s IP…

The study quickly attracted the notice of academics—but not for the reason Dropbox and the researchers had hoped. One sentence in particular caught readers’ attention: “Dropbox gave us access to project-folder-related data, which we aggregated and anonymized, for all the scientists using its platform over the period from May 2015 to May 2017—a group that represented 1,000 universities.” Written by Northwestern University Institute on Complex Systems professors Adam Pah and Brian Uzzi and Dropbox Manager of Enterprise Insights Rebecca Hinds, that wording suggested Dropbox had handed over personally identifiable information on hundreds of thousands of customers.
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By Tuesday, Harvard Business Review had corrected that part of the article to say the data was anonymized and aggregated prior to being given to the researchers. “Before providing any Dropbox users’ data to the researchers, Dropbox permanently anonymized the data by rendering any identifying user information unreadable, including individual emails and shared folder IDs,” a Dropbox spokesperson told WIRED. But while Dropbox’s more than half a billion users can rest easy that their de-anonymized data isn’t readily shared with researchers, the only consent Dropbox obtained from customers involved in the study was their agreement to its privacy policy and terms of service, according to representatives for Dropbox.
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