Reimagining Human Research Protections for 21st Century Science.

BACKGROUND: Evolving research practices and new forms of research enabled by technological advances require a redesigned research oversight system that respects and protects human research participants. OBJECTIVE: Our objective was to generate creative ideas for redesigning our current human research oversight system. METHODS: A total of 11 researchers and institutional review board (IRB) professionals participated in a January 2015 design thinking workshop to develop ideas for redesigning the IRB system. RESULTS: Ideas in 5 major domains were generated. The areas of focus were (1) improving the consent form and process, (2) empowering researchers to protect their participants, (3) creating a system to learn from mistakes, (4) improving IRB efficiency, and (5) facilitating review of research that leverages technological advances. CONCLUSIONS: We describe the impetus for and results of a design thinking workshop to reimagine a human research protections system that is responsive to 21st century science.

Privacy Policies for Apps Targeted Toward Youth: Descriptive Analysis of Readability.

BACKGROUND: Due to the growing availability of consumer information, the protection of personal data is of increasing concern. OBJECTIVE: We assessed readability metrics of privacy policies for apps that are either available to or targeted toward youth to inform strategies to educate and protect youth from unintentional sharing of personal data. METHODS: We reviewed the 1200 highest ranked apps from the Apple and Google Play Stores and systematically selected apps geared toward youth. After applying exclusion criteria, 99 highly ranked apps geared toward minors remained, 64 of which had a privacy policy. We obtained and analyzed these privacy policies using reading grade level (RGL) as a metric. Policies were further compared as a function of app category (free vs paid; entertainment vs social networking vs utility). RESULTS: Analysis of privacy policies for these 64 apps revealed an average RGL of 12.78, which is well above the average reading level (8.0) of adults in the United States. There was also a small but statistically significant difference in word count as a function of app category (entertainment: 2546 words, social networking: 3493 words, and utility: 1038 words; P=.02). CONCLUSIONS: Although users must agree to privacy policies to access digital tools and products, readability analyses suggest that these agreements are not comprehensible to most adults, let alone youth. We propose that stakeholders, including pediatricians and other health care professionals, play a role in educating youth and their guardians about the use of Web-based services and potential privacy risks, including the unintentional sharing of personal data.

Privacy Attitudes among Early Adopters of Emerging Health Technologies.

INTRODUCTION: Advances in health technology such as genome sequencing and wearable sensors now allow for the collection of highly granular personal health data from individuals. It is unclear how people think about privacy in the context of these emerging health technologies. An open question is whether early adopters of these advances conceptualize privacy in different ways than non-early adopters. PURPOSE: This study sought to understand privacy attitudes of early adopters of emerging health technologies. METHODS: Transcripts from in-depth, semi-structured interviews with early adopters of genome sequencing and health devices and apps were analyzed with a focus on participant attitudes and perceptions of privacy. Themes were extracted using inductive content analysis. RESULTS: Although interviewees were willing to share personal data to support scientific advancements, they still expressed concerns, as well as uncertainty about who has access to their data, and for what purpose. In short, they were not dismissive of privacy risks. Key privacy-related findings are organized into four themes as follows: first, personal data privacy; second, control over personal information; third, concerns about discrimination; and fourth, contributing personal data to science. CONCLUSION: Early adopters of emerging health technologies appear to have more complex and nuanced conceptions of privacy than might be expected based on their adoption of personal health technologies and participation in open science. Early adopters also voiced uncertainty about the privacy implications of their decisions to use new technologies and share their data for research. Though not representative of the general public, studies of early adopters can provide important insights into evolving attitudes toward privacy in the context of emerging health technologies and personal health data research.

Opportunities and challenges in the use of personal health data for health research.

OBJECTIVE: Understand barriers to the use of personal health data (PHD) in research from the perspective of three stakeholder groups: early adopter individuals who track data about their health, researchers who may use PHD as part of their research, and companies that market self-tracking devices, apps or services, and aggregate and manage the data that are generated. MATERIALS AND METHODS: A targeted convenience sample of 465 individuals and 134 researchers completed an extensive online survey. Thirty-five hour-long semi-structured qualitative interviews were conducted with a subset of 11 individuals and 9 researchers, as well as 15 company/key informants. RESULTS: Challenges to the use of PHD for research were identified in six areas: data ownership; data access for research; privacy; informed consent and ethics; research methods and data quality; and the unpredictable nature of the rapidly evolving ecosystem of devices, apps, and other services that leave "digital footprints." Individuals reported willingness to anonymously share PHD if it would be used to advance research for the good of the public. Researchers were enthusiastic about using PHD for research, but noted barriers related to intellectual property, licensing, and the need for legal agreements with companies. Companies were interested in research but stressed that their first priority was maintaining customer relationships. CONCLUSION: Although challenges exist in leveraging PHD for research, there are many opportunities for stakeholder engagement, and experimentation with these data is already taking place. These early examples foreshadow a much larger set of activities with the potential to positively transform how health research is conducted.

MyOSD 2014: Evaluating Oceanographic Measurements Contributed by Citizen Scientists in Support of Ocean Sampling Day.

The first Ocean Sampling Day (OSD) took place on June 21, 2014. In a coordinated effort, an internationally distributed group of scientists collected samples from marine surface waters in order to study microbial diversity on a single day with global granularity. Concurrently, citizen scientists enriched the OSD initiative through the MyOSD project, providing additional oceanographic measurements crucial to the contextualization of microbial diversity. Clear protocols, a user-friendly smartphone application, and an online web-form guided citizens in accurate data acquisition, promoting quality submissions to the project's information system. To evaluate the coverage and quality of MyOSD data submissions, we compared the sea surface temperature measurements acquired through OSD, MyOSD, and automatic in situ systems and satellite measurements. Our results show that the quality of citizen-science measurements was comparable to that of scientific measurements. As 79% of MyOSD measurements were conducted in geographic areas not covered by automatic in situ or satellite measurement, citizen scientists contributed significantly to worldwide oceanographic data gathering. Furthermore, survey results indicate that participation in MyOSD made citizens feel more engaged in ocean issues and may have increased their environmental awareness and ocean literacy.

The founding charter of the Genomic Observatories Network.

The co-authors of this paper hereby state their intention to work together to launch the Genomic Observatories Network (GOs Network) for which this document will serve as its Founding Charter. We define a Genomic Observatory as an ecosystem and/or site subject to long-term scientific research, including (but not limited to) the sustained study of genomic biodiversity from single-celled microbes to multicellular organisms.An international group of 64 scientists first published the call for a global network of Genomic Observatories in January 2012. The vision for such a network was expanded in a subsequent paper and developed over a series of meetings in Bremen (Germany), Shenzhen (China), Moorea (French Polynesia), Oxford (UK), Pacific Grove (California, USA), Washington (DC, USA), and London (UK). While this community-building process continues, here we express our mutual intent to establish the GOs Network formally, and to describe our shared vision for its future. The views expressed here are ours alone as individual scientists, and do not necessarily represent those of the institutions with which we are affiliated.

Improving the Odds Through the Collaboration Success Wizard.

Collaboration has become a dominant mode of scientific inquiry, and good collaborative processes are important for ensuring scientific quality and productivity. Often the participants in these collaborations are not collocated, yet distance introduces challenges. There remains a need for evaluative tools that can identify potential collaboration problems early and provide strategies for managing and addressing collaboration issues. This paper introduces a new research and diagnostic tool, the Collaboration Success Wizard (CSW), and provides two case studies of its use in evaluating ongoing collaborative projects in the health sciences. The CSW is designed both to validate and refine existing theory about the factors that encourage successful collaboration and to promote good collaborative practices in geographically distributed team-based scientific projects. These cases demonstrate that the CSW can promote reflection and positive change in collaborative science.