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Ethical Considerations in Social Media-
Based Research Involving
Adolescents
Seminar on a Published Original Research Article
Hisham E. Hasan, BPharm
MSc in Biomedical Ethics Candidate
Department of Clinical Pharmacy
Jordan University of Science and Technology (JUST)
Date
Nov. 14, 2023
Table of contents
•Awareness?
•Consent Beliefs?
•Trust in Research?
•Use of social media for research
•Concerns surrounding
adolescents' data
•Data Privacy
•Informed Consent
•Role of Social Media Platforms
•Study Design
•Data Analysis
•Best Practices
•Educational Implications
•Research Agenda
01
04
02
05
03
06
Introduction Research
Objectives
Methodology
Results Discussion Conclusion
Introduction
01
Exploring the ethical dimensions of research in the digital age involving adolescents
Social Media Age
●A computer-based technology that
facilitates the sharing of ideas, thoughts,
and information through virtual networks
and communities.
●Adolescents use social media networks
extensively to share a great amount of
data without enough understanding of
their rights and responsibilities!
Growing Use of Social Media for
Research
The growing use of social media as a
data source for research is not without
ethical challenges, especially when it
involves a vulnerable population.
Adolescents use social media
extensively, and researchers may utilize
their personal data without obtaining
proper consent. This practice raises
several ethical concerns, including the
lack of guidelines for IRBs to evaluate.
Social media has become a powerful
tool for research scientists. It offers a
cost-effective way to recruit study
participants and promote health
interventions to the public. With an
estimated 2.77 billion social media
users globally, the impact on people's
lives is undeniable. However, it's crucial
to acknowledge the increasing reliance
on social media for research purposes.
*Adolescents (vulnerable group): aged 10 to 19, in accordance with the WHO definition.
Ethical Concerns
The ethical concerns extend to data
privacy, informed consent, and the
reliability and validity of data collected.
Adolescents may be unaware of these
ethical considerations, necessitating a
closer examination of their awareness
and attitudes, which is the focus of our
study.
The Misuse of Digital Data
•In light of recent scandals related to the misuse of digital data, there is
growing mistrust of how social medial data are being used or abused.
•The ethical guidelines for research using social media data is lacking,
or it is not clear how researchers follow them when working with the
online data of children or adolescents.
Study Objectives
To delve into the attitudes
adolescents hold concerning the
use of their data in research. This
includes their views on informed
and parental consent, and data
privacy.
To gauge the level of awareness
among adolescents. We seek to
understand to what extent they
comprehend the privacy
implications of sharing data on
social media platforms.
Assessing
Awareness
Evaluating
Attitudes
To explore the level of trust they
have in research conducted
using data collected from social
media. We aim to understand if
skepticism or doubts affect their
willingness to participate in such
research endeavors.
Trust in
Research
Methodology
02
Study Design, Participants, Inclusion Criteria, Questionnaire, and Data Collection
A type of observational study design, used for population-based surveys to assess the prevalence
Measures the outcome
and the exposures at the
same time
The selection is based on
the inclusion and
exclusion criteria
Conclusions
●Usually fast and inexpensive
●For planning or as a baseline
●Snapshot capture at 1-time point
●Difficult to derive causal relationships
Cross-Sectional Study Design?
(Setia, 2016)
Cross-Sectional Study Design
Thru Developed & Validated
Questionnaire
Sociodemographic data, social media usage,
knowledge and attitudes related to
informed consent, and trust in research
Participants had to be
Jordanian citizens
Distributed via social media platforms such
as Facebook and Instagram
Online Survey
Nationality
Targeting Adolescents
Active on Social Media
Legal decision-making
and protect the rights
Recognize the minimal risk
and endorse the approach
Responsible Conduct in Research (RCR)
Protection of
vulnerable autonomy
Ensure the information
not shared with anyone
Principles of the Declaration
of Helsinki, ICH, and CFR-21
Informed
Consent
Parental/
Guardian Consent IRB Approval
Privacy &
Confidentiality
Adherence to
Ethical Guidelines
Data Analysis & Statistical Methods
For exploring
relationships between
categorical variables
To avoid violating the
assumptions of the
chi-
square test, where the
sample size is small (n < 5)
SPSS Software Chi-Square Test Fisher's Exact Test
Results
03
Categorized into three groups:
less than 16 years (early
adolescence), 16–17 years
(middle adolescence), and older
than 17 years (late adolescence).
Participant Age
A notable majority of the
participants were female,
constituting 73.3% of the sample.
Gender Distribution
Most participants accessed their
social media profiles at least twice
a day. The frequency of logins
increased with age, with the
majority being older than 17 years.
Social Media Usage
Demographic Characteristics of
N
=393
73.3% 88%17.2 ± 1.8
The rationale behind this
division refers to the
difference in adolescents’
physical, sexual, cognitive,
social, and emotional
changes during these age
groups.
Youngers
used more
fake info
Females
used more
fake info
Females
are more
private
Older
are
more
private
Key Findings in the Results
Awareness of Data Privacy
on Social Media
Adolescents' Beliefs Regarding
Consent
Trust in Research Conducted
via Social Media
●A significant majority of
participants, 72.5%, were aware
that researchers could use their
personal data from their social
media profiles for research
purposes. 71% agree to share their
data if the use of the data provided
benefits to their community.
●This is a crucial aspect of RCR, as it
ensures that participants are
informed about how their data
might be used, aligning with ethical
principles such as informed consent
and autonomy.
●The majority of participants, 93.6%,
believed that researchers must obtain
informed consent from the participants
themselves. This highlights the
significance adolescents place on their
own autonomy and right to decide
whether to participate in research.
●Moreover, 73.5% of the participants
believed that it must also obtain
consent from parents if they were
younger than 18 years. This reflects the
recognition of the need to involve legal
guardians in the decision-making
process when dealing with minors.
●76.8% of participants did not express
trust in research that depended on
data collected from social media.
They raised concerns about the
authenticity of the data, highlighting a
degree of skepticism regarding the
reliability of research conducted
through social media platforms.
●These findings emphasize the
importance of addressing the
challenges of data authenticity and
participant trust in research
conducted via social media.
Discussion
04
Importance, implications, and future directions
“Some researchers believe that consent is
mandatory for online data collection regardless
of the status of the profile, while others believe
that it is unnecessary especially for publicly
available information.”
—Debate arguments in literature?
Key Points Discussed
Ethical Considerations:
Data Privacy and Consent
Complexities of Obtaining
Online Informed Consent
Ethical Responsibility of
Social Media Platforms
●The importance of safeguarding
data privacy and ensuring the
confidentiality of their information
is a paramount ethical concern.
●Adolescents have the right to
understand and agree to participate
in research with full awareness of
potential risks and benefits. Plus,
additional legal protection from
parents is crucial.
●Regulatory bodies must play a vital
role in monitoring and enforcing
ethical guidelines to protect them.
●Adolescents, in particular, may overlook
or not fully understand the implications
of sharing their personal information
online, making the process of obtaining
informed consent more intricate.
●Consent forms must be designed in a
way that addresses individual
differences, especially when working
with adolescents, who may require
simplified language and additional
guidance.
●Social media platforms have an ethical
obligation to inform users about how
their data is being used, including any
potential research applications.
●These platforms should consider
involving parents when adolescents
are part of the research process.
●The collaboration between social
media platforms, researchers, and
parents is essential to create an
ethical and responsible research
environment.
Conclusion
05
Summarizing Key Findings
Recommended Best Practices for Ethical Social Media-Based Research
Considered
Alternatives
Increased
Awareness
Clear Privacy
Terms
Regulatory
Oversight
Need Further
Research
Adolescents
preference for
face-to-face
research as it is
considered more
accurate than
using social media
Education and
awareness
programs should
be implemented
through social
media, schools,
and parents
Social media
platforms should
aim to minimize
the complexity of
their privacy
terms and policies
Regulatory bodies
in every country
must play a
crucial role in
protecting the
rights of
adolescents in
research
Scarcity of
internet research
necessitates
further
investigation into
the ethical
challenges and
best practices
Thanks!
Do you have any questions?
hehassan23@ph.just.edu.jo
Sincere thanks to the class for their active
participation and attention during this discussion.
Q&A?