Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem.
Ontology highlight
ABSTRACT:
SUBMITTER: Dyke SOM
PROVIDER: S-EPMC9931855 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
Publications
Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem.
Dyke Stephanie O M SOM Connor Kathleen K Nembaware Victoria V Munung Nchangwi S NS Reinold Kathy K Kerry Giselle G Mbiyavanga Mamana M Zass Lyndon L Moldes Mauricio M Das Samir S Davis John M JM De Argila Jordi Rambla JR Spalding J Dylan JD Evans Alan C AC Mulder Nicola N Karamchandani Jason J
Neuroinformatics 20221215 1
We previously proposed a structure for recording consent-based data use 'categories' and 'requirements' - Consent Codes - with a view to supporting maximum use and integration of genomic research datasets, and reducing uncertainty about permissible re-use of shared data. Here we discuss clarifications and subsequent updates to the Consent Codes (v4) based on new areas of application (e.g., the neurosciences, biobanking, H3Africa), policy developments (e.g., return of research results), and furth ...[more]
Similar Datasets
Project description:Universities have been pressured by governments to change their way of acting and to be more responsible with the requirements of social development to face the challenges of globalization. To this end, universities must use the principles of Open Science, to allow them to be more transparent regarding the dissemination of scientific results. The purpose of this paper is firstly, to determine the progress made in Open Access policies made by the best-ranked universities regarding ARWU. Secondly, to examine influencing factors that enhance the level of openness in researching, in particular, "transparency", "reputation", "participation", "funding", "foundation" and "size". The main results show that those private and older universities, best-ranked in terms of excellence researching and those that have been gradually adopting Open Government policies concerning the dissemination of information through institutional web pages and social participation, are the most interested with complying the recommendations established by the authorities of the Open Science projects.
| S-EPMC7485769 | biostudies-literature
Project description:A systematic way of recording data use conditions that are based on consent permissions as found in the datasets of the main public genome archives (NCBI dbGaP and EMBL-EBI/CRG EGA).
| S-EPMC4721915 | biostudies-other
Project description:The Open Science Prize was established with the following objectives: first, to encourage the crowdsourcing of open data to make breakthroughs that are of biomedical significance; second, to illustrate that funders can indeed work together when scientific interests are aligned; and finally, to encourage international collaboration between investigators with the intent of achieving important innovations that would not be possible otherwise. The process for running the competition and the successes and challenges that arose are presented.
| S-EPMC5538631 | biostudies-other
Project description:ContextBiobanks are important resources which enable large-scale genomic research with human samples and data, raising significant ethical concerns about how participants' information is managed and shared. Three previous studies of the Canadian public's opinion about these topics have been conducted. Building on those results, an online survey representing the first study of public perceptions about biobanking spanning all Canadian provinces was conducted. Specifically, this study examined qualitative views about biobank objectives, governance structure, control and ownership of samples and data, benefit sharing, consent practices and data sharing norms, as well as additional questions and ethical concerns expressed by the public.ResultsOver half the respondents preferred to give a one-time general consent for the future sharing of their samples among researchers. Most expressed willingness for their data to be shared with the international scientific community rather than used by one or more Canadian institutions. Whereas more respondents indicated a preference for one-time general consent than any other model of consent, they constituted less than half of the total responses, revealing a lack of consensus among survey respondents regarding this question. Respondents identified biobank objectives, governance structure and accountability as the most important information to provide participants. Respondents' concerns about biobanking generally centred around the control and ownership of biological samples and data, especially with respect to potential misuse by insurers, the government and other third parties. Although almost half the respondents suggested that these should be managed by the researchers' institutions, results indicate that the public is interested in being well-informed about these projects and suggest the importance of increased involvement from participants. In conclusion, the study discusses the viability of several proposed models for informed consent, including e-governance, independent trustees and the use of exclusion clauses, in the context of these new findings about the views of the Canadian public.
| S-EPMC4495996 | biostudies-literature
Project description:BackgroundThe open science movement is transforming scientific practice with the goal of enhancing the transparency, productivity, and reproducibility of research. Nevertheless, transparency is a complex concept, and efforts to promote some forms of transparency may do relatively little to advance other important forms of transparency.ObjectivesDrawing from the literature in history, philosophy, and sociology of science, we aim to distinguish between different forms of scientific transparency. Our goal is to identify strategies for achieving forms of transparency that are relevant not only to scientists but also to decision makers and members of the public.DiscussionWe draw a distinction between "scientifically relevant transparency" and "socially relevant transparency." Most of the prominent strategies associated with the open science movement (e.g., making data publicly available and registering studies) are designed primarily to promote scientifically relevant transparency. To achieve socially relevant transparency, which is particularly important in fields like environmental health, further steps are needed to provide scientific information in ways that are relevant to decision makers and members of the public.ConclusionsPromoting socially relevant transparency will require a range of activities by many different individuals and institutions. We propose an array of strategies that can be pursued by scientists and other scholars, journals, universities, funders, government agencies, and members of the public. https://doi.org/10.1289/EHP4808.
| S-EPMC6792383 | biostudies-literature
Project description:BackgroundCanadians are increasingly gaining web-based access to digital health services, and they expect to access their data from these services through a central patient access channel. Implementing data sharing between these services will require patient trust that is fostered through meaningful consent and consent management. Understanding user consent requirements and information needs is necessary for developing a trustworthy and transparent consent management system.ObjectiveThe objective of this study is to explore consent management preferences and information needs to support meaningful consent.MethodsA secondary analysis of a national survey was conducted using a retrospective descriptive study design. The 2019 cross-sectional survey used a series of vignettes and consent scenarios to explore Canadians' privacy perspectives and preferences regarding consent management. Nonparametric tests and logistic regression analyses were conducted to identify the differences and associations between various factors.ResultsOf the 1017 total responses, 716 (70.4%) participants self-identified as potential users. Of the potential users, almost all (672/716, 93.8%) felt that the ability to control their data was important, whereas some (385/716, 53.8%) believed that an all or none control at the data source level was adequate. Most potential users preferred new data sources to be accessible by health care providers (546/716, 76.3%) and delegated parties (389/716, 54.3%) by default. Prior digital health use was associated with greater odds of granting default access when compared with no prior use, with the greatest odds of granting default access to digital health service providers (odds ratio 2.17, 95% CI 1.36-3.46). From a list of 9 information elements found in consent forms, potential users selected an average of 5.64 (SD 2.68) and 5.54 (SD 2.85) items to feel informed in consenting to data access by care partners and commercial digital health service providers, respectively. There was no significant difference in the number of items selected between the 2 scenarios (P>.05); however, there were significant differences (P<.05) in information types that were selected between the scenarios.ConclusionsA majority of survey participants reported that they would register and use a patient access channel and believed that the ability to control data access was important, especially as it pertains to access by those outside their care. These findings suggest that a broad all or none approach based on data source may be accepted; however, approximately one-fifth of potential users were unable to decide. Although vignettes were used to introduce the questions, this study showed that more context is required for potential users to make informed consent decisions. Understanding their information needs will be critical, as these needs vary with the use case, highlighting the importance of prioritizing and tailoring information to enable meaningful consent.
| S-EPMC9015739 | biostudies-literature
Project description:The prevalence of non-cigarette tobacco product use is on the rise across the globe, especially for waterpipes (also known as hookah, narghile, and shisha) and electronic cigarettes (e-cigarettes). The scientific literature reveals that waterpipe tobacco smoking is associated with exposure to a variety of toxicants that can cause short- and long-term adverse health events. In contrast, there is far less evidence of health harms related to e-cigarette use, although the variety of products in this category makes it difficult to generalize. We searched the PubMed database for all publications on waterpipes and e-cigarettes from January 2000 to March 2014. The number of publications on waterpipes rose in a slow, linear pattern during this time, while the number of publications on e-cigarettes showed exponential growth. The different trends suggest there may be more interest in studying a novel nicotine product (the e-cigarette) over a traditional tobacco product (the waterpipe). We posit that, although the specific research needs for these products are different, public health would be served best by a more equitable research approach. Scientists should continue to devote attention to understanding the unknown long-term health effects of e-cigarettes and their potential to serve as harm reduction or smoking cessation tools while simultaneously investigating how to reduce waterpipe smoking given that it exposes users to toxicants known to cause harm to health. Recent regulatory action in the United States, which proposes to include waterpipes and e-cigarettes under some of the same regulations as tobacco cigarettes, makes such research particularly timely.
| S-EPMC4137989 | biostudies-other
Project description:Mounting evidence indicates that worldwide, innovation systems are increasing unsustainable. Equally, concerns about inequities in the science and innovation process, and in access to its benefits, continue. Against a backdrop of growing health, economic and scientific challenges global stakeholders are urgently seeking to spur innovation and maximize the just distribution of benefits for all. Open Science collaboration (OS) - comprising a variety of approaches to increase open, public, and rapid mobilization of scientific knowledge - is seen to be one of the most promising ways forward. Yet, many decision-makers hesitate to construct policy to support the adoption and implementation of OS without access to substantive, clear and reliable evidence. In October 2017, international thought-leaders gathered at an Open Science Leadership Forum in the Washington DC offices of the Bill and Melinda Gates Foundation to share their views on what successful Open Science looks like. Delegates from developed and developing nations, national governments, science agencies and funding bodies, philanthropy, researchers, patient organizations and the biotechnology, pharma and artificial intelligence (AI) industries discussed the outcomes that would rally them to invest in OS, as well as wider issues of policy and implementation. This first of two reports, summarizes delegates' views on what they believe OS will deliver in terms of research, innovation and social impact in the life sciences. Through open and collaborative process over the next months, we will translate these success outcomes into a toolkit of quantitative and qualitative indicators to assess when, where and how open science collaborations best advance research, innovation and social benefit. Ultimately, this work aims to develop and openly share tools to allow stakeholders to evaluate and re-invent their innovation ecosystems, to maximize value for the global public and patients, and address long-standing questions about the mechanics of innovation.
| S-EPMC5852639 | biostudies-literature
Project description:CyVerse, the largest publicly-funded open-source research cyberinfrastructure for life sciences, has played a crucial role in advancing data-driven research since the 2010s. As the technology landscape evolved with the emergence of cloud computing platforms, machine learning and artificial intelligence (AI) applications, CyVerse has enabled access by providing interfaces, Software as a Service (SaaS), and cloud-native Infrastructure as Code (IaC) to leverage new technologies. CyVerse services enable researchers to integrate institutional and private computational resources, custom software, perform analyses, and publish data in accordance with open science principles. Over the past 13 years, CyVerse has registered more than 124,000 verified accounts from 160 countries and was used for over 1,600 peer-reviewed publications. Since 2011, 45,000 students and researchers have been trained to use CyVerse. The platform has been replicated and deployed in three countries outside the US, with additional private deployments on commercial clouds for US government agencies and multinational corporations. In this manuscript, we present a strategic blueprint for creating and managing SaaS cyberinfrastructure and IaC as free and open-source software.
| S-EPMC10878509 | biostudies-literature
Project description: Not available
| S-EPMC10688847 | biostudies-literature