Major Ethical Considerations Research Articles

Exploring ethical practice in NGOS on mental health research in Malawi.

In recent years, an increasing trend in mental health research has been to collaborate with non-governmental organizations [NGOs] and their constituents. However, ethical difficulties can arise as a result of such partnerships. Understanding the ethics-related practices of NGOs engaged in mental health research is therefore critical. This study addressed these questions in a Malawian context. The goal of this study was to investigate NGO's ethical practices in relation to mental health research by identifying characteristics that influence ethical practices and investigating staff conceptualization of ethics and mental health. Twenty individuals who work for different local NGOs took part in one-on-one interviews or a workshop about their engagement in diverse research initiatives. They pinpointed the areas that needed improvement, as well as the challenges and chances to create partnerships and increase research capability. The diversity in conceptualizing mental health was a key influence on research practices, with heterogeneity in definitions reflected in the use of cultural, spiritual, behavioural, or medical terms. Notably, there was also a greater emphasis on procedural ethics than ethics-in-practice. Collaboration dynamics and limited staffing capacity were cited as major ethical practice considerations. Each of these elements have an impact on NGOs' ethical behaviour when conducting mental health research. Participants in the study saw engagement with notions of both ethics and mental health as lacking or rudimentary in their institutions and felt that they needed to be improved through capacity building and stronger research involvement.

Human Genetics Society of Australasia Position Statement: Predictive and Presymptomatic Genetic Testing in Adults and Children.

This Position Statement provides guidelines for health professionals who work with individuals and families seeking predictive genetic testing and laboratory staff conducting the tests. It presents the major practical, psychosocial and ethical considerations associated with presymptomatic and predictive genetic testing in adults who have the capacity to make a decision, children and young people who lack capacity, and adults living with reduced or fluctuating cognitive capacity.Predictive Testing Recommendations: (1) Predictive testing in adults, young people and children should only be offered with pretest genetic counseling, and the option of post-test genetic counseling. (2) An individual considering whether to have a predictive test should be supported to make an autonomous and informed decision. Regarding Children and Young People: (1) Predictive testing should only be offered to children and young people for conditions where there is likely to be a direct medical benefit to them through surveillance, use of prevention strategies, or other medical interventions in the immediate future. (2) Where symptoms are likely to develop in childhood, in the absence of direct medical benefit from this knowledge, genetic health professionals and parents/guardians should discuss whether undertaking predictive testing is the best course of action for the child and the family as a whole. (3) Where symptoms are likely to develop in adulthood, the default position should be to postpone predictive testing until the young person achieves the capacity to make an autonomous and informed decision. This is applicable regardless of whether there is some action that can be taken in adulthood.

Ethical Issues Surrounding Facial Feminization Surgery: Five Major Considerations.

Facial feminization surgery (FFS) is a form of gender-affirming care for the transgender population that is currently a highly debated topic both inside and outside of the medical community. Currently, a paucity of information is available in plastic surgery literature on ethical issues surrounding FFS. In this paper, we discuss 5 major ethical considerations for plastic surgeons with regard to FFS: (1) how society's changing view of gender has impacted the importance of FFS; (2) whether FFS is medically necessary and should be covered by insurance; (3) to what extent resources should be invested in removing barriers to access FFS; (4) how patient selection criteria should address the irreversibility of the procedure and age of consent; and (5) how femininity and beauty standards contribute to each other and whether they can be disentangled. This paper aims to analyze the arguments made for and against each of these 5 nuanced issues and to expand these debates from the theoretical to the practical by suggesting approaches for reconciliation.

Publicidad a medida. Impacto de las variables sociodemográficas en los contenidos comerciales que los menores reciben en el móvil

La preferencia de los menores por el teléfono móvil como vía de acceso a internet se constata a nivel global. Su consumo de contenidos está íntimamente asociado a la presencia de intereses comerciales que ven en este grupo de edad un segmento de mucho interés presente y futuro. Las posibilidades de segmentación que ofrece la tecnología, sumadas a las que añade el carácter personal del dispositivo, abren muchas consideraciones estratégicas, pero también éticas sobre la personalización de los contenidos con base en perfiles y pautas de comportamiento online. A través del análisis de contenido de 2410 anuncios, que menores de entre 10 y 14 años del Área Metropolitana de Santiago de Chile recibieron en sus teléfonos móviles, se busca averiguar si las variables sociodemográficas inciden en el tipo de publicidad que consumen. Se añade también la variable posesión del móvil como elemento de estudio. Los resultados apuntan a diferencias significativas de la publicidad a la que son expuestos en función de todas las variables, lo que plantea consideraciones éticas de gran calado.

P071 COVID-19 Ethics and Gastroenterology.

BACKGROUND: Ethical principles in the field of medicine have become increasingly relevant during the COVID-19 pandemic, during which practitioners are required to provide care in resource-limited settings. Numerous and unique ethical challenges arise in the practice of gastroenterology, due to the field's identity as both a clinical and procedural specialty. It is imperative for gastroenterologists to consider these dilemmas and a case-based primer is useful in initiating discourse. METHODS: Comprehensive literature review was performed through databases including MEDLINE, EMBASE, and Web of Science Core Collection. RESULTS: Case-Based Reasoning: Futility versus Intervention: A 34-year-old with alpha-1 antitrypsin disease, on the transplant list presents with pneumonia and hepatic necrosis secondary to COVID-19 and is now in fulminant hepatic failure. Should this patient still be on the transplant list? The dilemma between futility versus intervention arises in cases in which treatment will provide questionable benefit. Studies have shown that decisions on futility versus intervention are influenced heavily by degree of the patient-provider relationship. In addition to prospects of recovery, key considerations include weighing the post-procedural recovery process and the potential use of the resource for other patients. RESPONSIBILITY TO PRACTICE: A 54-year-old gastroenterologist is immunocompromised. There is a shortage of internists, and he has been recruited to the front lines. In the face of the COVID-19 pandemic, gastroenterologists have been recruited to the front lines, assuming roles as general hospitalists. This dilemma requires weighing the moral duty of practicing versus opting out of putting oneself at harm’s way. The AMA’s 2018 Statement on Medical Ethics stated that providers should have liberty in their decision to practice with exception of emergency situations. The provider should balance their personal risk and professional duty. Resource Distribution: In the liver unit, there are three patients suspected to have profound variceal bleeds and only one gastroenterologist is covering due to provider shortage. Which patient should be prioritized? Resource distribution is not a situation unique to COVID-19, however practitioner shortage has become a more common dilemma. Not being able to treat in the face of an emergency can be cause for provider burnout, and it is important to address as to prevent moral distress. Initiation of Therapy: A 22-year-old nurse, has been suggested to initiate immunosuppressive treatment for Crohn’s disease. It is the onset of the pandemic. The patient is asking if she should still undergo the therapy. Prior to offering recommendations, physicians have the ethical duty to (1) seek unbiased sources of information, (2) consult with experts, and (3) keep updated on clinical guidelines which may arise in the future. The physician should also maximize autonomy, emphasizing the patient’s role in decision-making. CONCLUSION: Major ethical considerations for the field of gastroenterology in the face of the COVID-19 pandemic include (1) futility versus intervention, (2) responsibility to practice, (3) resource distribution and (4) initiation of therapy. A case-based discussion is useful in initiating conversation regarding how best to proceed.

Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study.

BackgroundLimited research evidence exists on the development of web-based platforms for reciprocal communication, coproduction research, and dissemination of information among parents, professionals, and researchers. This paper provides learning and the outcomes of setting up a bespoke web-based platform using social media.ObjectiveThis study aims to explore the establishment of a web-based, multicontextual research communication platform for parents and stakeholders of children with congenital anomalies using social media and to identify associated research and ethical and technical challenges.MethodsThe ConnectEpeople e-forum was developed using social media platforms with a stakeholder engagement process. A multilevel approach was implemented for reciprocal engagement between parents of children with congenital anomalies, researchers, health care professionals, and other stakeholders using private and invisible and public Facebook groups, closed Twitter groups, and YouTube. Ethical approval was obtained from Ulster University.ResultsNonprofit organizations (N=128) were invited to engage with an initial response rate of 16.4% (21/128). Of the 105 parents contacted, 32 entered the private and invisible Facebook groups to participate in the coproduction research. Public Facebook page followers rose to 215, a total of 22 posts had an engagement of >10%, and 34 posts had a reach of over 100. Webinars included requested information on childhood milestones and behavior. YouTube coverage included 106 ConnectEpeople videos with 28,708 impressions. Project information was obtained from 35 countries. The highest Facebook activity occurred during the early morning hours. Achievement of these results required dedicated time management, social media expertise, creativity, and sharing knowledge to curate valuable content.ConclusionsBuilding and maintaining a multilayered online forum for coproduction and information sharing is challenging. Technical considerations include understanding the functionality and versatility of social media metrics. Social media offers valuable, easily accessible, quantitative, and qualitative data that can drive the reciprocal process of forum development. The identification and integration of the needs of the ConnectEpeople e-forum was a key driver in the dissemination of useful, meaningful, and accessible information. The necessary dedicated administration to respond to requests and posts and collate data required significant time and effort. Participant safety, the development of trust, and the maintenance of confidentiality were major ethical considerations. Discussions on social media platforms enabled parents to support each other and their children. Social media platforms are particularly useful in identifying common family needs related to early childhood development. This research approach was challenging but resulted in valuable outputs requiring further application and testing. This may be of particular importance in response to COVID-19 or future pandemics. Incorporating flexible, adaptable social media strategies into research projects is recommended to develop effective platforms for collaborative and impactful research and dissemination.

Unresolved Privacy and Ethics Issues Related to Learning Analytics in Higher Education and Academic Librarianship

Learning analytics involve big data collection, analysis processes, and technology that are used in higher education institutes and academic libraries to support student success and perform organizational assessment. Since these processes require the input of personally identifiable student and patron information to be effective, there are major ethical and legal considerations that must be addressed concerning privacy. This article demonstrates that privacy concerns about learning analytics can be mitigated by requiring informed consent from participants, establishing protocols for the collection and management of personally identifiable information, and advocating privacy rights of patrons. By synthesizing and expanding on viewpoints from the literature, this article offers recommendations pertaining to the collection, analysis, and management of patron data that are gathered for the purpose of learning analytics.

Human Genetics Society of Australasia Position Statement: Predictive and Presymptomatic Genetic Testing in Adults and Children.

In 2020, the Human Genetics Society of Australasia released its Position Statement on Predictive and Presymptomatic Genetic Testing in Adults and Children. This Position Statement synthesizes the major practical, psychosocial and ethical considerations associated with presymptomatic and predictive genetic testing in adults who have the capacity to make a decision, children and young people who lack capacity and adults living with reduced or fluctuating capacity. Recommendations include that predictive testing in adults, young people and children should only be offered with pretest genetic counseling and the option of posttest genetic counseling. An individual considering (for themselves or on behalf of another) whether to have a predictive test should also be supported to allow them to make an autonomous and informed decision. Predictive testing should only be offered to children and young people for conditions where there is likely to be a direct medical benefit to them through surveillance, use of prevention strategies or other medical interventions in the immediate future. Where symptoms are likely to develop in childhood, in the absence of options to implement surveillance or risk reduction measures, genetic health professionals and parents/guardians should discuss whether undertaking predictive testing is the best course of action for the child and the family as a whole. Where symptoms are likely to develop in adulthood, the default position should be to postpone predictive testing until the young person achieves the capacity to make their own autonomous and informed decision.

Compulsory treatment in eating disorders: Control, provocation, and the coercion paradox

In eating disorders, the denial of the illness is a central phenomenon. In the most severe forms of anorexia, compulsory treatment may be necessary. The professional acceptance of involuntary treatment is controversial due to the fact that the autonomy of the patient is juxtaposed with the obligation of the health care practitioner to save lives. This paper discusses the major practical and ethical considerations surrounding this controversy. In addition, case vignettes are used to illustrate various strategies to diminish client resistance and enhance motivation toward treatment. Involving the family is nearly always essential for the treatment of patients with eating disorders. In some cases, parental consultation (i.e., treatment without the client) can also be an option. Home visits, though rarely used, can reframe the therapeutic relationship and provide information about family functioning. In general, a lower level of treatment coercion can be achieved through transparent client-parent and client-therapist communication.

Ethics of Human Genome Editing.

Advances in human genome editing, in particular the development of the clustered regularly interspaced palindromic repeats (CRISPR)/Cas9 method, have led to increasing concerns about the ethics of editing the human genome. In response, the US National Academy of Sciences and the National Academy of Medicine constituted a multidisciplinary, international committee to review the current status and make recommendations. I was a member of that committee, and the core of this review reflects the committee's conclusions. The committee's report, issued in February 2017, recommends the application of current ethical and regulatory standards for gene therapy to somatic (nonheritable) human genome editing. It also recommends allowing experimental germline genome editing to proceed if ( a) it is restricted to preventing transmission of a serious disease or condition, ( b) the edit is a modification to a common DNA sequence known not to be associated with disease, and ( c) the research is conducted under a stringent set of ethical and regulatory requirements. Crossing the so-called red line of germline genome editing raises important bioethical issues, most importantly, serious concern about the potential negative impact on individuals with disabilities. This review highlights some of the major ethical considerations in human genome editing in light of the report's recommendations.

How Should Primary Care Physicians Respond to Direct-to-Consumer Genetic Test Results?

In this case, a primary care physician is presented with direct-to-consumer genetic test results and asked to provide counseling and order follow-up diagnostics. In order to deal effectively with this situation, we suggest physicians need look no further than the practice principles that guide more routine clinical encounters. We examine the rationale behind 2 major clinical ethical considerations: (1) physicians have obligations to help their patients achieve reasonable health goals but are not obligated to perform procedures that are not medically indicated; and (2) primary care physicians do not need to know everything; they just need to know how to get their patients appropriate care.

Ethics and Social Media: Professional Considerations for the School Psychologist

Given the widespread use of social media by school psychologists and the clients they serve, it is essential that school psychologists are knowledgeable about the potential benefits and risks associated with its use. Social media offers a powerful tool to improve practice in many ways, such as supporting professional collaboration, enhancing communication, and innovating treatment strategies. However, if not used carefully, practitioners’ engagement with social media may inadvertently result in ethical missteps or diminished professional effectiveness. This article outlines major ethical considerations related to the personal and professional use of social media by school psychologists. Implications for school psychology training and practice are described.

Ethical and Legal Issues Addressing the Use of Mobile Health (mHealth) as an Adjunct to Psychotherapy

mHealth refers to the rapidly evolving use of mobile devices for health care treatment purposes, particularly the use of apps and texting as adjuncts to psychotherapy. Although there is currently an extensive literature on issues related to telehealth, to date little guidance has been developed to help professionals function ethically in the rapidly emerging area of mHealth. This article identifies the major ethical considerations that need attention and proposes several recommendations to address mHealth use as an adjunct to psychotherapy, including the pressing need for relevant American Psychological Association practice guidelines to assist mental health providers in the ethical implementation of mHealth.

Ethical considerations of e-cigarette use for tobacco harm reduction.

Due to their similarity to tobacco cigarettes, electronic cigarettes (e-cigarettes) could play an important role in tobacco harm reduction. However, the public health community remains divided concerning the appropriateness of endorsing a device whose safety and efficacy for smoking cessation remain unclear. We identified the major ethical considerations surrounding the use of e-cigarettes for tobacco harm reduction, including product safety, efficacy for smoking cessation and reduction, use among non-smokers, use among youth, marketing and advertisement, use in public places, renormalization of a smoking culture, and market ownership. Overall, the safety profile of e-cigarettes is unlikely to warrant serious public health concerns, particularly given the known adverse health effects associated with tobacco cigarettes. As a result, it is unlikely that the population-level harms resulting from e-cigarette uptake among non-smokers would overshadow the public health gains obtained from tobacco harm reduction among current smokers. While the existence of a gateway effect for youth remains uncertain, e-cigarette use in this population should be discouraged. Similarly, marketing and advertisement should remain aligned with the degree of known product risk and should be targeted to current smokers. Overall, the available evidence supports the cautionary implementation of harm reduction interventions aimed at promoting e-cigarettes as attractive and competitive alternatives to cigarette smoking, while taking measures to protect vulnerable groups and individuals.

More than just a game: ethical issues in gamification

Gamification is the use of elements and techniques from video game design in non-game contexts. Amid the rapid growth of this practice, normative questions have been under-explored. The primary goal of this article is to develop a normatively sophisticated and descriptively rich account for appropriately addressing major ethical considerations associated with gamification. The framework suggests that practitioners and designers should be precautious about, primarily, but not limited to, whether or not their use of gamification practices: (1) takes unfair advantage of workers (e.g., exploitation); (2) infringes any involved workers' or customers' autonomy (e.g., manipulation); (3) intentionally or unintentionally harms workers and other involved parties; or (4) has a negative effect on the moral character of involved parties.

Major Ethical Considerations and Technological Challenges Related to Distance Professional Services

Counseling with the assistance of technology is becoming more widespread. The use of the internet in counseling and psychotherapy will likely increase in preval because of advanced technology and more internet users. Virtual counseling will be a reality and in the future, professional counseling sessions about personal and professional concerns may be accomplished as virtual counseling instead of during the traditional face-to-face meeting. Some counselors may see this trend as positive while, others may be concerned with ethical issues and quality. Counselors should present a professional identity on the Internet that is in line with our values, practices, and ethical standards. The authors describe the major ethical considerations and technological challenges related to distance proonal services with a special focus on the area of video-based professional counseling.

D.I.3 Ethical implications of unexpected results from next generation sequencing studies

Recent advances in next-generation sequencing technologies have brought a paradigm shift in how medical researchers investigate both rare and common human disorders. The ability cost-effectively to generate genome-wide sequencing data with deep coverage in a short time frame is replacing approaches that focus on specific regions for gene discovery and clinical testing. Exome sequencing, and soon whole genome sequencing, places many advantages of the emerging technologies into clinicians and researchers’ hands. The expectation is that, in the very near future, this technology will enable us to identify all the variants in an individual’s personal genome and, in particular, clinically relevant alleles. Beyond this, whole genome sequencing is also expected to bring a major shift in clinical practice in terms of diagnosis and understanding of diseases, ultimately enabling individualized medicine based on one’s genome. As personal genome research advances, investigators and international research bodies must ensure ethical research conduct. Major ethical considerations that have been implicated in whole-genome research include the return of research results to participants; the obligations, if any, that are owed to participants’ relatives; how to deal with an increased ascertainment of novel sequence variants of uncertain clinical significance, and most importantly unveil unanticipated results and ethical dilemmas; and the future use of samples and data taken for whole-genome sequencing. The current lecture will provide an overview of implications for personal genomics and discuss recommendations for appropriate management in the context of research and clinical management involving individual whole-genome sequencing.

Preface: Evolving Ethical Issues Over the Course of the AIDS Pandemic

In the early years of the AIDS pandemic, one of the major ethical considerations facing frontline AIDS medical researchers was the issue of patient accessibility to clinical trials. This issue loomed large because at the time, there were no licensed antiretroviral drugs to treat people with the disease, there were only experimental drugs being tested in clinical trials.1 Clearly, the standard approach to the design of clinical trials—that is, rigid eligibility criteria as well as the strict regulatory aspects that attend clinical trial investigations and drug approval—was not well-suited to a novel, largely fatal disease such as this with no effective treatments, and we had many intense discussions about how to make that approach more flexible and ethically sound. One example, which I and others worked closely with the AIDS activists to develop, was called a parallel track for clinical trials. The parallel track concept, which the United States Food and Drug Administration ultimately came to support, meant that there would be the standard type of highly controlled admission criteria and data collection for the clinical trial of a particular drug. In parallel, however, the drug also could be made available to those who did not meet the trial’s strict admission criteria but were still in dire need of any potentially effective intervention, however unproven, for this deadly disease. So that to me was a prevailing ethical issue in the early years of the AIDS pandemic—the need to re-examine the justification or not of the rigidity and exclusivity of our clinical trial process. The ultimate resolution of the dilemma was to create this parallel track approach where you could be more flexible in letting people have access to experimental drugs.

Ethical aspects of participation in the Database of Genotypes and Phenotypes of the National Center for Biotechnology Information

The rapid pace of genetics research, coupled with evolving standards for informed consent, can create ethical challenges regarding future use of tissue or information from completed clinical trials. The Cancer and Leukemia Group B (CALGB) Oncology Cooperative Group was faced with an ethical dilemma regarding sharing genetic data from a completed genome-wide association study (GWAS) that was conducted as part of a large, multicenter breast cancer clinical trial with a national database: the Database of Genotypes and Phenotypes National Center for Biotechnology Information (dbGaP). The CALGB Ethics Committee conducted a series of multidisciplinary meetings and teleconferences involving patient advocates, bioethicists, clinical researchers, and clinical oncologists to evaluate the ethical issues raised by this case and to identify lessons for improving informed consent to future genetics research in oncology trials. The Ethics Committee recommended that GWAS data be provided to dbGaP consistent with documented consent for future use of tissue among trial participants. Ethical issues, including adequacy of informed consent to future research, limitations of privacy in modern genetics research, the potential impact of population-based genetics research on health disparities, and recontact of research participants for clinical care or further research, were identified as major ethical considerations in this area. Although modern standards for informed consent should not prohibit research or sharing of data consistent with participant's intent and the public interest, there is an urgent need for national consensus on the appropriate use of archived tissue and standardized informed consent for future research among cancer clinical trial participants.

Ethical Challenges in the Treatment of Individuals With Intellectual Disabilities

The effective provision of psychotherapy services to individuals with intellectual disability requires consideration of ethical issues related to clinical competence, access to services, obligations to multiple parties, guardianship, and appropriate assessment practices. This article provides an overview of major ethical considerations with guidance for clarifying and resolving common ethical concerns. Psychologists are encouraged to expand access to psychotherapy services for this population while maintaining awareness of potential modifications, training needs, and boundaries of professional competence. The authors provide recommendations and resources for effective and ethical treatment of psychotherapy clients with intellectual disabilities.