‘Scraping’ Reddit posts for academic research? Addressing some blurred lines of consent in growing internet-based research trend during the time of Covid-19
Nicholas Norman Adams
International Journal of Social Research Methodology, 18 August 2022
The global scale of Covid-19 has constrained academics from conducting much person-facing research. Reactively, trend is increasing for digital-based methodologies capturing already existing online data. Scholars often ‘scrape’ user-postings from internet forums using coding algorithms and text capture tools, before analysing data, drawing conclusions and publishing findings. The online social news aggregation and discussion website Reddit is a particularly rich source of data for researchers. The public nature of Reddit materials may suggest rationale for user-data to be replicated, analysed and archived; indefinitely and in multiple locations, for scholarly research. However, this position overlooks several key ethical considerations. This paper presents an overview and explanation of Reddit, followed by an exploration of studies that use Reddit-acquired data. Arising ethical issues are discussed, and solutions to salient dilemmas presented. This is to enhance awareness of potential problems and improve protections for those whose data is unknowingly used for research.
Privacy Risks in Microbiome Research: Public Perspectives before and during a Global Pandemic
Andrea Shin, Huiping Xu
Ethics & Human Research, 8 July 2022; 44(4) pp 26-33
We assessed public perspectives of microbiome research privacy risks before and after a nationwide emergency was declared in the United States regarding the Covid-19 pandemic. From January to July of 2020, we conducted an online survey of perceived privacy risks of microbiome research among U.S. adults. Among 3,106 participants (the preemergency group), most expressed that the microbiome posed privacy risks similar to those associated with DNA (60.3%) or medical records (50.6%) and that they would prefer detailed explanations (70.2%) of risk in consent materials. Only 8.9% reported moderate to high familiarity with microbiome privacy risks. In adjusted analyses, individuals who participated in the study after the Covid-19 emergency was declared (the Covid-19 emergency group) were less likely to express that microbiome privacy risks were similar to those of DNA or medical records and more likely to report familiarity with the privacy risks of microbiomes. There was a trend toward increased concern after the Covid-19 emergency was declared (p = 0.053). Overall, the study revealed that many U.S. adults believe that microbiome privacy risks are similar to those associated with DNA or medical records, and they prefer detailed explanations in consent documents. Individuals who participated after the Covid-19 emergency was declared reported greater knowledge of microbiome privacy risks but had more concern.
When is public private? Tweets, privacy and consent in health research
Sabitra Kaphle, Rachel Kornhaber, Susan Hunt, Roger Watson, Michelle Cleary
Nurse Education in Practice, August 2022; 63
Online social media platforms provide opportunities for the global community to share and express their views, opinions, reactions, and feelings openly. The use of social media for the purpose of information sharing surged during the COVID-19 pandemic due to mandated physical distancing requirements. This is a seemingly consensual catharsis at a time of heightened need for alternative social activity and critical information sharing. Communication on open social media platforms has created opportunities for researchers to access and analyse rich, publicly available data to study a range of topics and issues. The creation of this abundant public data has also led to fundamental methodological and ethical challenges for social science researchers. Namely, is the use of this public data for research a breach of privacy and confidentiality? Are social media users becoming involuntary research participants as their communications and personal information are mined and published on without participant insight and informed consent? In this discussion, we aim to highlight some of the critical methodological and ethical issues that researchers must consider while using Twitter as a data source to publish from.
Assessment of Social Trust in Relatives of Discharged Patients With Personal Consent and Other Relatives of Patients
Hamid Reza Moretza Bagi, Zhila Khamnian, Forough Hatami, Samad Shams Vahdati, Reza Yazdani, Sama Rahnemayan
Journal of Patient Experience, 6 July 2022
Lack of social trust in the physician–patient relationship will disrupt health. Since social trust has not been sufficiently studied in patients’ companions, this study investigates and compares social trust and its dimensions in companions of patients discharged against medical advice with total patients’ companions in the emergency room. In this cross-sectional descriptive-comparative study, 385 patients’ companions were enrolled. This study was done by a questionnaire with five subscales: honesty, frankness, cooperative tendency, confidence, and trust. Data were analyzed using descriptive statistics and analytical statistics methods. In this study, there was no significant difference between the mean score of social trust between companions of patients discharged against medical advice (61.11 ± 9.01) and patients discharged after treatment (62.27 ± 6.97). There was a significant relationship between the mean score of the 2 groups only in the frankness domain (P-value = .001). The level of social trust in the patients’ companions was moderate in both groups. Companions of discharged patients after completing the treatment process are more explicit than the companions of patients discharged against medical advice.
Co-creation with research participants to inform the design of electronic informed consent
Evelien De Sutter, David Geerts, Pascal Borry, Kristien Coteur, Dorien Bamps, Heleen Marynissen, Els Ampe, Els Geenens, Marleen Depré, Isabelle Huys
Digital Health, 6 June 2022; 8 pp 1–11
This study aimed to provide recommendations for a personalized electronic informed consent interface that is adapted to research participants’ needs and could enable a longitudinal interaction between the participants and the research team.
The co-creation process consisted of three co-creation workshops, one focus group discussion, and four semi-structured interviews. In total, 24 participants, who had taken part in four disparate clinical studies in Belgium, were involved. Descriptive statistics and qualitative content analysis were applied to analyze the survey data and audio recordings.
Varying perceptions on the type and amount of information described in an informed consent form were reported. Other findings were related to the structure and presentation of information, setting preferences for data sharing, and electronically signing new informed consent versions. Regarding the long-term interaction, most of the participants wanted to receive progress updates, including the results, of the study in which they had taken part. They proposed to receive a notification, preferably via email, in case new information is made available on the electronic informed consent interface.
To optimally support the design of an electronic informed consent interface, it is key to understand the research participants’ needs. Study findings suggest that an electronic informed consent interface may be a promising technological application to interactively provide study-related information and to keep participants informed during and after the clinical study.
Coercion and non-consent during birth and newborn care in the United States
Rachel G. Logan, Monica R. McLemore, Zoë Julian, Kathrin Stoll, Nisha Malhotra, Saraswathi Vedam
Birth, 23 June 2022
In the United States, Black, Indigenous, and People of Color (BIPOC) experience more adverse health outcomes and report mistreatment during pregnancy and birth care. The rights to bodily autonomy and consent are core components of high-quality health care. To assess experiences of coercion and nonconsent for procedures during perinatal care among racialized service users in the United States, we analyzed data from the Giving Voice to Mothers (GVtM-US) study.
In a subset analysis of the full sample of 2700, we examined survey responses for participants who described the experience of pressure or nonconsented procedures or intervention during perinatal care. We conducted multivariable logistic regression analyses by racial and ethnic identity for the outcomes: pressure to have perinatal procedures (eg, induction, epidurals, episiotomy, fetal monitoring), nonconsented procedures performed during perinatal care, pressure to have a cesarean birth, and nonconsented procedures during vaginal births.
Among participants (n = 2490), 34% self-identified as BIPOC, and 37% had a planned hospital birth. Overall, we found significant differences in pressure and nonconsented perinatal procedures by racial and ethnic identity. These inequities persisted even after controlling for contextual factors, such as birthplace, practitioner type, and prenatal care context. For example, more participants with Black racial identity experienced nonconsented procedures during perinatal care (AOR 1.89, 95% CI 1.35–2.64) and vaginal births (AOR 1.87, 95% CI 1.23–2.83) than those identifying as white. In addition, people who identified as other minoritized racial and ethnic identities reported experiencing more pressure to accept perinatal procedures (AOR 1.55, 95% CI 1.08–2.20) than those who were white.
There is a need to address human rights violations in perinatal care for all birthing people with particular attention to the needs of those identifying as BIPOC. By eliminating mistreatment in perinatal care, such as pressure to accept services and nonconsented procedures, we can help mitigate long-standing inequities.
Use of pre-enrollment randomization and delayed consent to maximize participation in a clinical trial of opt-in versus opt-out tobacco treatment
Babalola Faseru, Laura M. Mussulman, Niaman Nazir, Edward F. Ellerbeck, Elena Shergina, Taneisha S. Scheuermann, Byron J. Gajewski, Delwyn Catley, Kimber P. Richter
Substance Abuse, 18 April 2022; 43(1)
Enrollment in smoking cessation trials remain sub-optimal. The aim of this analysis was to determine the effectiveness of a modified Zelen’s design in engaging hospitalized patients who smoke in a pragmatic OPT-IN versus OPT-OUT tobacco treatment trial.
At bedside, clinical staff screened smokers for eligibility, randomized eligible into study arms, and delivered the appropriate treatment approach. Study staff called randomized patients at one-month post-discharge, debriefed patients on the study design, and collected consent to participate. We used frequencies and percentages for categorical variables and means and standard deviations for quantitative variables to describe the characteristics of those who consented and were enrolled versus those who did not enroll. We also compared the characteristics of participants who consented and those who were reached and explicitly refused consent at one-month follow-up. We used the Cohen’s d measure of effect size to evaluate differences.
Of the 1,000 randomized, 741 (74.1%) consented to continue in the study at one-month follow-up. One hundred and twenty-seven (12.7%) refused consent and 132 (13.2%) were unreachable. Cohen’s d effect size differences between those who consented/enrolled (n = 741) and those who were not enrolled (n = 259) were negligible (<0.2) for age, gender, race/ethnicity, and most forms of insurance. The effect size was small for Medicaid (0.36), and other public insurance (0.48). After excluding those unreached at 1 month (12.7%), there were medium Cohen’s d effect size differences between those who consented to participate (n = 741) and those who explicitly refused (n = 127) with respect to age (0.55) and self-pay or no insurance (0.51). There were small to negligible effect size differences with respect to sex, race/ethnicity, and other forms of health insurance.
The modified Zelen’s design resulted in successful enrollment of most participants who were initially randomized into the trial, including those not motivated to quit.
The ethical performance of access and consent in ethnographic research on social work encounters with migrant-background service users
Hanna Kara, Maija Jappinen, Camilla Nordberg, Anna-Leena Riitaoja
Qualitative Social Work, 2022; pp 1-16
In this article, we contribute to an emerging body of literature concerning the often overlooked topics of access and consent in research. We posit our understanding of access and consent as continuous ethical reflection and negotiation, conceptualised here as ethical performance, which is particularly valuable in research in institutional contexts defined by numerous power asymmetries. We draw empirically from research on street level institutional encounters between social work practitioners and migrant-background service users in the Helsinki capital region. Access in this research was a multi-stage process including various stage-related negotiations, and the previous stages always influenced the stages that followed. Nevertheless, access and consent were always erratic and subject to revision. We describe how the need for ethical reflexivity arises in various concrete, often unpredictable, situations, and argue for the importance of paying explicit analytical attention to negotiations regarding access and consent.
The Effect of Digital Literacy on Participation in Social Media Clinical Trials in Cancer: Tailoring an Informed Consent Process
Debra Parker Oliver, George Demiris, Karla T. Washington, Kyle Pitzer, Connie Ulrich
Telemedicine and e-Health, 21 Mar 2022
This study asked: (1) How does digital literacy influence one’s decision to consent to a social media intervention study? (2) What is a brief way to assess individual digital literacy before an individual’s decision to participate in a trial? and (3) How can a consent process be tailored around an individual’s digital literacy level?
We used an assessment tool to investigate digital literacy of those who chose to consent to a clinical trial and those who did not consent to the clinical trial but agreed to participate in a digital literacy study.
A total of 161 hospice caregivers completed the digital literacy assessment. Older individuals and those who rated themselves as more proficient in the use of technology and social media were more likely to consent to the social media clinical trial.
We found that asking participants to rate their technology skills and social media skills allows researchers to tailor a consent process. For those who are comfortable with technology and social media the traditional process is appropriate. For individuals that rate themselves with weaker technology and social media skills it is important that the consent process includes assurance they will receive adequate support in the use of the technology and the media. The next step is to test the assessment and tailoring of consent processes for a social media clinical trial. Clinical Trial # NCT02929108.
Patient-centred consent in women’s health: does it really work in antenatal and intra-partum care?
Jacqueline Nicholls, Anna L David, Joseph Iskaros, Anne Lanceley
BMC Pregnancy and Childbirth, 25 February 2022; 22(156)
Legal and social changes mean that information sharing and consent in antenatal and intrapartum settings is contentious, poorly understood and uncertain for healthcare professionals. This study aimed to investigate healthcare professionals’ views and experiences of the consent process in antenatal and intrapartum care.
Qualitative research performed in a large urban teaching hospital in London. Fifteen healthcare professionals (obstetricians and midwives) participated in semi-structured in-depth interviews. Data were collectively analysed to identify themes in the experiences of the consent process.
Three themes were identified: (1) Shared decision-making and shared responsibility –engaging women in dialogue is often difficult and, even when achieved, women are not always able or do not wish to share responsibility for decisions (2) Second-guessing women – assessing what is important to a woman is inherently difficult so healthcare professionals sometimes feel forced to anticipate a woman’s views (3) Challenging professional contexts – healthcare professionals are disquieted by consent practice in the Labour ward setting which is often at odds with legal and professional guidance.
Results suggest that there is a mismatch between what is required of healthcare professionals to effect an antenatal or intrapartum consent process concordant with current legal and professional guidance and what can be achieved in practice. If consent, as currently articulated, is to remain the barometer for current practice, healthcare professionals need more support in ways of enabling women to make decisions which healthcare professionals feel confident are autonomous whatever the circumstances of the consultation.