The Menlo Report: Ethical Principles Guiding Information and Communication Technology Research

Dittrich, David; Kenneally, Erin

doi:10.2139/ssrn.2445102

Cited by 137 publications

(45 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Given the new challenges in developing ethical digital health studies (e.g., privacy considerations, data management and consent) (see Figure 1 ), the DHC tool prompts the researcher to consider factors that can influence responsible and safe research practices. The DHC is undergirded by a framework grounded in accepted ethical principles of respect for persons, beneficence and justice ( 1 ) augmented by a fourth principle of respect for law and public interest ( 13 ). The checklist items are depicted in a matrix table with the vertical listing ethical principles with the horizontal listed the four domains of: Access and Usability, Privacy, Risks and Benefits, and Data Management.…”

Section: Methodsmentioning

confidence: 99%

Applying a Digital Health Checklist and Readability Tools to Improve Informed Consent for Digital Health Research

Nebeker

Gholami

Kareem

et al. 2021

Front. Digit. Health

View full text Add to dashboard Cite

Background: As research involving human participants increasingly occurs with the aid of digital tools (e.g., mobile apps, wearable and remote pervasive sensors), the consent content and delivery process is changing. Informed consent documents to participate in research are lengthy and difficult for prospective participants to read and understand. As the consent communication will need to include concepts and procedures unique to digital health research, making that information accessible and meaningful to the prospective participant is critical for consent to be informed. This paper describes a methodology that researchers can apply when developing a consent communication for digital health research.Methods: A consent document approved by a US institutional review board was deconstructed into segments that aligned with federal requirements for informed consent. Three researchers independently revised each segment of text with a goal of achieving a readability score between a 6–8th grade level. The team then consulted with an external readability expert well-versed in revising informed consent documents into “plain language.” The resulting text was evaluated using Microsoft Word and Online-Utility accessibility software. The final step involved adding visual images and graphics to complement the text. The Digital Health Checklist consent prototype builder was then used to identify areas where the consent content could be expanded to address four key domains of Access and Usability, Privacy, Risks and Benefits, and Data Management.Results: The approved consent was evaluated at a 12.6 grade reading level, whereas the revised language by our study team received 12.4, 12, and 12.58, respectively. The final consent document synthesized the most readable of the three revised versions and was further revised to include language recommended by the software tool for improving readability, which resulted in a final revised consent readability score of a 9.2 grade level. Moreover, word count was reduced from 6,424 in the original consent to 679 in the rewritten consent form.Conclusion: Utilizing an iterative process to design an accessible informed consent document is a first step in achieving meaningful consent to participate in digital health research. This paper describes how a consent form approved by an institutional review board can be made more accessible to a prospective research participant by improving the document readability score, reducing the word count and assessing alignment with the Digital Health Checklist.

show abstract

Section: Methodsmentioning

confidence: 99%

Applying a Digital Health Checklist and Readability Tools to Improve Informed Consent for Digital Health Research

Nebeker

Gholami

Kareem

et al. 2021

Front. Digit. Health

View full text Add to dashboard Cite

show abstract

“…Measurement researchers and their industrial research partners perceive privacy laws and regulations as a barrier to collecting, using, and sharing measurement data. Institutional Review Boards (IRBs) are tasked with ethical and regulatory oversight of measurement research that involves the collection, use, or sharing of personally identifiable information, consistent with ethical principles, and more recently with privacy laws and regulations [12,13]. In this rapidly evolving research ecosystem, IRB decisions are surprisingly variable across institutions and the community would benefit from more uniformity.…”

Section: Privacymentioning

confidence: 99%

Workshop on Overcoming Measurement Barriers to Internet Research (WOMBIR 2021) final report

claffy

Clark²,

Heidemann

et al. 2021

SIGCOMM Comput. Commun. Rev.

View full text Add to dashboard Cite

In January and April 2021 we held the Workshop on Overcoming Measurement Barriers to Internet Research (WOMBIR) with the goal of understanding challenges in network and security data set collection and sharing. Most workshop attendees provided white papers describing their perspectives, and many participated in short-talks and discussion in two virtual workshops over five days. That discussion produced consensus around several points. First, many aspects of the Internet are characterized by decreasing visibility of important network properties, which is in tension with the Internet's role as critical infrastructure. We discussed three specific research areas that illustrate this tension: security, Internet access; and mobile networking. We discussed visibility challenges at all layers of the networking stack, and the challenge of gathering data and validating inferences. Important data sets require longitudinal (long-term, ongoing) data collection and sharing, support for which is more challenging for Internet research than other fields. We discussed why a combination of technical and policy methods are necessary to safeguard privacy when using or sharing measurement data. Workshop participant proposed several opportunities to accelerate progress, some of which require coordination across government, industry, and academia.

show abstract

“…The FCC's Technical Advisory Committee (a multistakeholder group) has drafted a recommendation on "harm claim thresholds", i.e., what level of interference should constitute a harm to the incumbent. 5 Additionally, there is increasing research interest in using the large amount of spectrum available in higher bands (> 20 GHz) for communication, since complex antenna arrays can now be built using small antennas, allowing beam forming to mitigate attenuation over short distances.…”

Section: Spectrum Utilizationmentioning

confidence: 99%

“…Given that the international landscape is fragmented, and perceptions are changing around the word, he suggested an approach that would give researchers and IRBs tools (and time) to talk, with basic changes to current processes such as new forms with assistive questions and links to informative background related to a given guideline. Subsequent discussion explored the risk of disaster-driven progress, and the future benefit the community may gain by being prepared for overreactive policy positions; such preparation could include developing guideline document drafts, e.g., [1,5,3]. There was extensive discussion across multiple sessions of privacy models in mobile data, including whether it was possible to transfer some knowledge or processes from the Census Bureau to control use of privacysensitive data.…”

Section: Economic and Policy Challengesmentioning

confidence: 99%

The 6th Workshop on Active Internet Measurements (AIMS-6) Report

claffy

2014

SIGCOMM Comput. Commun. Rev.

View full text Add to dashboard Cite

On 26-27 March 2014, CAIDA hosted the sixth Workshop on Active Internet Measurements (AIMS-6) as part of our series of Internet Statistics and Metrics Analysis (ISMA) workshops. As with previous AIMS workshops, the goals were to further our understanding of the potential and limitations of active measurement research and infrastructure in the wide-area Internet, and to promote cooperative solutions and coordinated strategies between academics, industry, policymakers, and funding agencies in the area of active Internet measurement. This year, we explored capabilities and opportunities for network measurement in the wireless domain, and research infrastructure to support it. Participants found the workshop content challengingly diverse, with substantial knowledge exchange regarding the wireless research infrastructure landscape(s) and existing measurement capabilities. But attendees agreed that the conversation was only beginning, and that some challenges merit further discussion, such as finding consensus on standard metrics to measure, and constructing a road map for wireless measurement research infrastructure and activities for the next decade. This report describes topics discussed at the workshop, and summarizes participants' views of priorities for future funding as well as follow-on workshops in this area. Materials related to the workshop are available at http://www.caida.org/workshops/aims/1403/.

show abstract

The Menlo Report: Ethical Principles Guiding Information and Communication Technology Research

Cited by 137 publications

References 0 publications

Applying a Digital Health Checklist and Readability Tools to Improve Informed Consent for Digital Health Research

Applying a Digital Health Checklist and Readability Tools to Improve Informed Consent for Digital Health Research

Workshop on Overcoming Measurement Barriers to Internet Research (WOMBIR 2021) final report

The 6th Workshop on Active Internet Measurements (AIMS-6) Report

Contact Info

Product

Resources

About