Dataset Information

Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review.

ABSTRACT: While emerging digital health technologies offer researchers new avenues to collect real-time data, little is known about current ethical dimensions, considerations, and challenges that are associated with conducting digital data collection in research with minors. As such, this paper reports the findings of a scoping review which explored existing literature to canvass current ethical issues that arise when using digital data collection in research with minors. Scholarly literature was searched using electronic academic databases for articles that provided explicit ethical analysis or presented empirical research that directly addressed ethical issues related to digital data collection used in research with minors. After screening 1,156 titles and abstracts, and reviewing 73 full-text articles, 20 articles were included in this review. Themes which emerged across the reviewed literature included: consent, data handling, minors' data rights, observing behaviors that may result in risk of harm to participants or others, private versus public conceptualizations of data generated through social media, and gatekeeping. Our findings indicate a degree of uncertainty which invariably exists with regards to the ethics of research that involves minors and digital technology. The reviewed literature suggests that this uncertainty can often lead to the preclusion of minors from otherwise important lines of research inquiry. While uncertainty warrants ethical consideration, increased ethical scrutiny and restricting the conduct of such research raises its own ethical challenges. We conclude by discussing and recommending the ethical merits of co-producing ethical practice between researchers and minors as a mechanism to proceed with such research while addressing concerns around uncertainty.

SUBMITTER: Facca D

PROVIDER: S-EPMC7451523 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review.

Facca Danica D Smith Maxwell J MJ Shelley Jacob J Lizotte Daniel D Donelle Lorie L

PloS one 20200827 8

While emerging digital health technologies offer researchers new avenues to collect real-time data, little is known about current ethical dimensions, considerations, and challenges that are associated with conducting digital data collection in research with minors. As such, this paper reports the findings of a scoping review which explored existing literature to canvass current ethical issues that arise when using digital data collection in research with minors. Scholarly literature was searched ...[more]

PMID: 32853218

Similar Datasets

Project description:BACKGROUND:Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. METHODS:We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. RESULTS:We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18?second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. CONCLUSIONS:We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.

Project description:BackgroundThe internet is an increasingly popular tool in family and child research that is argued to pose new ethical challenges, yet few studies have systematically assessed the ethical issues of engaging parents and children in research online. This scoping review aims to identify and integrate evidence on the ethical issues reported when recruiting, retaining and tracing families and children in research online, and to identify ethical guidelines for internet research.MethodsAcademic literature was searched using electronic academic databases (Scopus, PsycINFO, Embase, ERIC, CINAHL and Informit) and handsearching reference lists for articles published in English between January 2006 and February 2016. Grey literature was searched using Google to identify relevant ethical guidelines.ResultsSixty-five academic articles were included after screening 3,537 titles and abstracts and 205 full-text articles. Most articles reported using the internet to recruit participants (88%) with few reporting online retention (12%) or tracing (10%). Forty percent commented on ethical issues; the majority did not discuss ethics beyond general consent or approval procedures. Some ethical concerns were specific to engaging minors online, including parental consent, age verification and children's vulnerability. Other concerns applied when engaging any research participant online, including privacy and confidentiality, informed consent and disparities in internet access. Five professional guidelines and 10 university guidelines on internet research ethics were identified. Few academic articles (5%) reported using these guidelines.ConclusionsEngaging families and children in research online introduces unique challenges requiring careful consideration. While researchers regarded themselves as responsible for ensuring research is conducted ethically, lack of use of available guidelines and limited academic literature suggests internet research is occurring without suitable guidance. We recommend broad dissemination of ethical guidelines and encourage researchers to report the methodological and ethical issues of using the internet to engage families and children in research.

Project description:BackgroundMentoring provides mentees and mentors with holistic support and research opportunities. Yet, the quality of this support has been called into question amidst suggestions that mentoring is prone to bullying and professional lapses. These concerns jeopardise mentoring's role in medical schools and demand closer scrutiny.MethodsTo better understand prevailing concerns, a novel approach to systematic scoping reviews (SSR) s is proposed to map prevailing ethical issues in mentoring in an accountable and reproducible manner. Ten members of the research team carried out systematic and independent searches of PubMed, Embase, ERIC, ScienceDirect, Scopus, OpenGrey and Mednar databases. The individual researchers employed 'negotiated consensual validation' to determine the final list of articles to be analysed. The reviewers worked in three independent teams. One team summarised the included articles. The other teams employed independent thematic and content analysis respectively. The findings of the three approaches were compared. The themes from non-evidence based and grey literature were also compared with themes from research driven data.ResultsFour thousand six titles were reviewed and 51 full text articles were included. Findings from thematic and content analyses were similar and reflected the tabulated summaries. The themes/categories identified were ethical concerns, predisposing factors and possible solutions at the mentor and mentee, mentoring relationship and/or host organisation level. Ethical concerns were found to stem from issues such as power differentials and lack of motivation whilst predisposing factors comprised of the mentor's lack of experience and personality conflicts. Possible solutions include better program oversight and the fostering of an effective mentoring environment.ConclusionsThis structured SSR found that ethical issues in mentoring occur as a result of inconducive mentoring environments. As such, further studies and systematic reviews of mentoring structures, cultures and remediation must follow so as to guide host organisations in their endeavour to improve mentoring in medical schools.

Dataset Information

Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review.

Publications

Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets