Incidental Genetic Findings Discovered During Autopsy: An Ethical Analysis of Patient Confidentiality Post-Mortem
Protections for patient confidentiality during life prove essential for effective healthcare. However, post-mortem, these protections can cease. Postmortem, technological advancements enhance autopsy evaluations but also contribute to incidental findings during autopsy. An incidental finding, unrelated to the cause of death, can include genetic conditions which can have significant implications for family members of the deceased. The ethical and legal implications of disclosing incidental findings with genetic components to family members of a deceased patient are evaluated in this research and advance directives are explored as a possible solution to protecting patient confidentiality post-mortem.
Ethical considerations for the use of ecological momentary assessment in non-suicidal self-injury research
Research examining non-suicidal self-injury (NSSI) in daily life has grown substantially; thus, it is essential in conducting ecological momentary assessment (EMA) research with individuals who self-injure to follow important ethical guidelines. Given the challenges faced by researchers in monitoring, assessing, and responding to risk among those who self-injure, further guidance and research is warranted in informing best-practices for conducting EMA research examining NSSI. We suggest ethics-based approaches to professional competence, responding to and monitoring risk, and ensuring inclusive and representative approaches to NSSI research in daily life. Related empirical and practical issues in need of further investigation are discussed.
Addressing Fraudulent Responses in Quantitative and Qualitative Internet Research: Case Studies from Body Image and Appearance Research
The rise of online research methods has expanded the scope of research globally and has made research more inclusive. However, it has also led to a surge in fraudulent research participation, with individuals and bots infiltrating studies for personal gain or disruption. This is of particular concern in mental health studies, as fraudulent responses jeopardize interventions and care efforts. This paper addresses these challenges, presenting case studies from psychological research. The urgent need for a comprehensive understanding of fraudulent responses in both quantitative and qualitative online research is emphasized, urging the research community to confront and mitigate this issue effectively.
Youth and Parent Appraisals of Participation in a Study of Spontaneous and Induced Pediatric Clinical Pain
The current study examined youths' and their parents' perceptions concerning participation in an investigation of spontaneous and induced pain during recovery from laparoscopic appendectomy. Youth (age range 5-17 years) and their parents independently completed surveys about their study participation. On a 0 (very negative) -to-10 (very positive) scale, both parents 9.4(1.3) [mean(SD)] and youth 7.9(2.4) rated their experience as positive. Among youth, experience ratings did not differ by pain severity and survey responses did not differ by age. Most youth (83%) reported they would tell another youth to participate. Ethical issues regarding instigation of pain in youth for research purposes are examined.
Ethical Considerations in Providing Psychological Services to Unaccompanied Immigrant Children
Over 50,000 youth, mostly between the ages of 13 and 17 years, migrated to the United States (US) without familial accompaniment in fiscal year 2018. The tripartite process of pre-flight, flight, and resettlement exposes these unaccompanied immigrant children (UIC) to multiple, and often ongoing, traumatic events that can significantly and adversely impact their mental health into adulthood. However, the ethical considerations for psychologists working with this growing population, with limited exceptions, remain largely unaddressed. As more and more UIC flee their home countries due to violence, abuse, and economic instability only to experience further stressors during the processes of detainment, custodial placement, and acculturative adjustment in the US, there is an increasing need for psychological services; thus, the importance of preparation of mental health providers is increasingly significant. Psychologists must have the requisite skills and knowledge of the complex experiences of UIC, and of how these intersect with salient cultural, developmental, and systemic factors, as a means of providing competent and ethical mental health treatment. The present article highlights several ethical issues that arise when providing psychological services to UIC, with particular consideration paid to the embeddedness of UIC in various organizational entities with which psychologists will likely need to interface when working with this population. Implications and recommendations for practicing psychologists and training programs are discussed.
Supporting ethical practice in community-engaged research with : Respond, Record, Reflect, and Revise
Efforts towards adaptation, dissemination, and implementation of culturally robust, evidence-informed mental healthcare rely on community-engaged research (CEnR). Academic-community partnerships help bring science to service for vulnerable and historically disenfranchised populations (e.g., communities of color and those characterized by poverty). A growing literature supports the development of a framework of ethics for CEnR. This article examines ethical tensions in the context of the American Psychological Association Ethics Code General Principles - - and presents the 4R action plan to support application of APA guidelines to academic-community partnership with youth-serving organizations.
Predictors of College Students' Likelihood to Report Hypothetical Rape: Rape Myth Acceptance, Perceived Barriers to Reporting, and Self-Efficacy
Rape myth acceptance (RMA), perceived barriers, and self-efficacy were examined as predictors of likelihood to report different types of rape to law enforcement among 409 undergraduates. Participants had lower likelihood to report incapacitated compared to physically forced rape. Men had lower reporting likelihood than women for rape perpetrated by the same and opposite sex, and were more likely to perceive several barriers. RMA and perceived barriers predicted a lower likelihood to report several types of rape. Among men, higher self-efficacy predicted increased reporting likelihood. Targeting RMA and decreasing perceived barriers is imperative to increase college students' likelihood to report rape to local and campus law enforcement.
Sexual health research among youth representing minority populations: To waive or not to waive parental consent
Human immunodeficiency virus (HIV) and other sexually transmitted infections (STIs) significantly burden youth aged 13-24 years in the United States. Directly engaging youth in sexual health research is a public health priority and urgently needed to develop targeted, youth-friendly, and culturally relevant HIV/STI prevention interventions. Controversies arise, however, regarding informed assent and consent, parental permission or consent, and the definition of "child"/"minor" as it relates to medical, legal and ethical issues. In this paper, we describe challenges in the human subjects review processes that were undertaken before beginning an HIV/STI prevention research project with sexually active youth in an urban setting. These findings provide important contextual information to facilitate youth sexual health research and care, and Institutional Review Board approval processes with fewer delays.
A Social Constructivism Decision-Making Approach to Managing Incidental Findings in Neuroimaging Research
Functional magnetic resonance imaging (fMRI) is a powerful tool used in cognitive neuroscientific research. fMRI is noninvasive, safe, and relatively accessible, making it an ideal method to draw inferences about the brain-behavior relationship. When conducting fMRI research, scientists must consider risks associated with brain imaging. In particular, the risk of potentially identifying an abnormal brain finding in an fMRI research scan poses a complex problem that researchers should be prepared to address. This article illustrates how a social constructivism decision-making model can be used as a framework to guide researchers as they develop protocols to address this issue.
Ethical Perspectives in Sharing Digital Data for Public Health Surveillance Before and Shortly After the Onset of the COVID-19 Pandemic
Data from digital technologies are increasingly integrated in public health research. In April of 2020, we interviewed a subset of participants (N=25) who completed a survey approximately one month earlier (just prior to the declaration of the COVID-19 pandemic in the United States). Using the survey, we contacted and interviewed participants who had expressed their willingness or unwillingness to share digital data (e.g., from contact tracing apps) for use in public health. We followed a directed content analysis approach for the analysis of the interview data. Among participants who had reported being unwilling to share data, concerns about privacy, confidentiality, and the purpose of the research were cited. During the interviews, 76.9% of the participants who had previously indicated that they were unwilling to share their data, expressed willingness to share data in order to assist with COVID-19 prevention. Our results contribute to our understanding of people's perspectives on sharing personal data and of the way their perspectives can vary as a function of potential uses of their personal information (e.g., prevention of COVID-19).
Factors Influencing Perceived Helpfulness and Participation in Innovative Research: A Pilot Study of Individuals with and without Mood Symptoms
Little is known about how individuals with and without mood disorders perceive the inherent risks and helpfulness of participating in innovative psychiatric research, or about the factors that influence their willingness to participate. We conducted an online survey with 80 individuals (self-reported mood disorder [n = 25], self-reported good health [n = 55]) recruited via MTurk. We assessed respondents' perceptions of risk and helpfulness in study vignettes associated with two innovative research projects (intravenous ketamine therapy and wearable devices), as well as their willingness to participate in these projects. Respondents with and without mood disorders perceived risk similarly across projects. Respondents with no mood disorders viewed both projects as more helpful to society than to research volunteers, while respondents with mood disorders viewed the projects as equally helpful to volunteers and society. Individuals with mood disorders perceived ketamine research, and the two projects on average, as more helpful to research volunteers than did individuals without mood disorders. Our findings add to a limited empirical literature on the perspectives of volunteers in innovative psychiatric research.
Implementation of a Risk Reduction Protocol in Youth Violence Research
This article presents data from the Growing up with Media study related to the implementation of a risk reduction protocol that resulted in three groups of youth: low-risk youth (no flags), youth flagged because of violence involvement and not clinically referred; and flagged youth who were referred to a team clinician due to additional risk considerations. Data is from 3,979 U.S. youth 14-15 years of age recruited through social media between October 2018-August 2019. Four in ten youth were flagged for review. Findings suggest that this methodology of identifying and reviewing cases appears to be working as intended: Not only did referred youth have more flags than non-referred youth, but post-hoc analyses suggested that these youth also had higher rates of psychosocial problems (e.g., non-victimization adversity, substance use and depressed mood). The implementation of a risk reduction protocol such as the one described in this article adds a layer of human subject protection beyond the more standard list of websites and hotlines provided to all participants in most studies. This protocol leads the way for future studies to recreate a similar process to address concerning responses collected from survey research.
Aligning values with standards: a comparison of professional values in Continuing Education standards
Continuing education (CE) aims to help health professionals fulfill their ethical responsibility of maintaining professional competence. This research compares the CE guidelines and standards of 11 health professional organizations in relation to five domains of evolving professional values: ethics, cultural diversity, social justice, interprofessionalism, and self-care. Results showed that ethics received the greatest attention across the CE standards, followed by interprofessionalism and cultural diversity. This study offers a starting point for CE accreditors to examine the extent to which their CE standards align with their profession's stipulated values, and to situate themselves within the broader context of health profession accreditors.
Research ethics education needs assessment in Serbian medical researchers
The lack of formal education in research ethics is a significant issue for the ethical conduct of research in Serbia. We conducted a cross-sectional survey in a sample of researchers and ethics committee members in Serbia to evaluate their self-assessed competence and educational needs in research ethics. Results indicated that previous ethics education had a significant effect on respondents' perception of their own competence in addressing issues like informed consent, authorship and publishing. Respondents expressed a high motivation for further research ethics education. Moreover, the study revealed that researchers with different specializations and different research experience have different educational needs.
"Money Helps": People who inject drugs and their perceptions of financial compensation and its ethical implications
This study documents how people who inject drugs (PWID) in rural Puerto Rico perceive payments for participating in HIV epidemiological studies. In-depth interviews were conducted among a subset ( = 40) of active PWID older than 18 years of age who had been previously enrolled in a much larger study ( = 360). Findings suggest that financial compensation was the main motivation for initially enrolling in the parent study. Then, as trust in the researchers developed, participants came to perceive compensation as part of a reciprocal exchange in which they assisted researchers by providing a trustful account of their experiences and researchers reciprocated with financial support.
Ethical Considerations for Assessing Parent Mental Health during Child Assessment Services
Parents play an integral role in the mental health service provision of children and adolescents, and they can have significant effects on the outcomes of youth. A growing body of research has linked parents' own mental health status to numerous outcomes for their children, and recent guidelines have emerged recommending the assessment of parent psychopathology when treating child patients. However, these recommendations present a range of ethical considerations. Mental health professionals must determine if the assessment of a parent is empirically supported and that an assessment procedure appropriate for parents can be feasibly implemented. They must also respect the autonomy and confidentiality of parents while ensuring that assessment findings can be translated to meaningful benefits for child patients. This article details and discusses each of these concerns within the context of the relevant principles and standards of the 2016 American Psychological Association's Code of Ethics. Further, it provides guidelines, relevant clinical examples, and an applied model for mental health professionals to consider the ethical implications of assessing parent mental health when serving child patients.
Ethical Considerations for Treating the Old Order Amish
The Old Order Amish are the fastest growing religious subpopulation in the United States. The Amish population, most recently estimated at 340,000, is expected to double in size during the next 20 years. While still relatively few in number, their growing population and increasing interaction with American society will likely result in more Amish individuals seeking mental health treatment. Despite the call for culturally competent mental health professionals, this population has been underrepresented in the psychotherapy literature. To the best of the author's knowledge, this article is the first known attempt to review the ethical considerations that may arise when working with members of the Old Order Amish. This article uses the American Psychological Association's to frame the discussion of ethical mental health treatment with Amish individuals.
Perceived Risks and Benefits in a Text Message Study of Substance Abuse and Sexual Behavior
To inform ethical procedures for human subjects research using mobile health (mHealth), we examined perceived risks and benefits of study participation among emerging adults (=54) with drug use who completed text message assessments of substance use and sexual behaviors. Most participants reported comfort with participation and some reported perceived benefits, such as improved relationships. Perceived risks were infrequently reported, including negative emotions, and legal or financial concerns. In conclusion, participants from a vulnerable population reported few perceived harms of participation in longitudinal mHealth assessments of sensitive behaviors. Researchers should continue characterizing participants' perspectives on ethical aspects of mHealth research.
Considerations for the Ethical Implementation of Psychological Assessment Through Social Media via Machine Learning
The ubiquity of social media usage has led to exciting new technologies such as machine learning. Machine learning is poised to change many fields of health, including psychology. The wealth of information provided by each social media user in combination with machine learning technologies may pave the way for automated psychological assessment and diagnosis. Assessment of individuals' social media profiles using machine learning technologies for diagnosis and screening confers many benefits (i.e., time and cost efficiency, reduced recall bias, information about an individual's emotions and functioning spanning months or years, etc.); however the implementation of these technologies will pose unique challenges to the professional ethics of psychology. Namely, psychologists must understand the impact of these assessment technologies on privacy and confidentiality, informed consent, recordkeeping, bases for assessments, and diversity and justice. This paper offers a brief review of the current applications of machine learning technologies in psychology and public health, provides an overview of potential implementations in clinical settings, and introduces ethical considerations for professional psychologists. This paper presents considerations which may aid in the extension of the current Ethical Principles of Psychologists and Code of Conduct to address these important technological advancements in the field of clinical psychology.
Are Ethics Training Programs Improving? A Meta-Analytic Review of Past and Present Ethics Instruction in the Sciences
Given the growing public concern and attention placed on cases of research misconduct, government agencies and research institutions have increased their efforts to develop and improve ethics education programs for scientists. The present study sought to assess the impact of these increased efforts by sampling empirical studies published since the year 2000. Studies published prior to 2000 examined in other meta-analytic work were also included to provide a baseline for assessing gains in ethics training effectiveness over time. In total,this quantitative review consisted of 66 empirical studies, 106 ethics courses, 150 effect sizes, and 10,069 training participants. Overall, the findings indicated that ethics instruction resulted in sizable benefits to participants and has improved considerably within the last decade. A number of specific findings also emerged regarding moderators of instructional effectiveness. Recommendations are discussed for improving the development, delivery, and evaluation of ethics instruction in the sciences.
"They know what they are getting into:" Researchers confront the benefits and challenges of online recruitment for HIV research
Online research has become a critical recruitment modality for understanding and reducing health disparities among hidden populations most at risk for HIV infection. There is a lack of consensus and guidelines for the responsible conduct of online recruitment for HIV risk populations. Using semi-structured phone interviews, this study drew on the experiences of principal investigators (PIs) engaged in online HIV research to illuminate scientific and ethical benefits and challenges of social media recruitment. Using Thematic Analysis five major themes emerged: sampling advantages and disadvantages; challenges of data integrity; control of privacy protections; researcher competence and responsibility; and resources.
