Community/Research Collaborations: Ethics and Funding

Ethical challenges discussed in this innovative Special Issue on community-based participatory research projects suggest that the funders of such projects may misunderstand the unique challenges imposed when a researcher and a community agency collaborate. This commentary conveys information about ways in which a funding agency can more clearly envision these specific challenges and facilitate collaborations through ethical grant mechanisms. Although other articles in the series have discussed the ethical challenges of the researcher, this article discusses the importance of the ethical stance of the funder in protecting both the academic and community stakeholders, so that sustainable, effective, community-based interventions succeed.     

Ethical Issues in Using Twitter for Public Health Surveillance and Research: Developing a Taxonomy of Ethical Concepts From the Research Literature

BackgroundThe rise of social media and microblogging platforms in recent years, in conjunction with the development of techniques for the processing and analysis of “big data”, has provided significant opportunities for public health surveillance using user-generated content. However, relatively little attention has been focused on developing ethically appropriate approaches to working with these new data sources.ObjectiveBased on a review of the literature, this study seeks to develop a taxonomy of public health surveillance-related ethical concepts that emerge when using Twitter data, with a view to: (1) explicitly identifying a set of potential ethical issues and concerns that may arise when researchers work with Twitter data, and (2) providing a starting point for the formation of a set of best practices for public health surveillance through the development of an empirically derived taxonomy of ethical concepts.MethodsWe searched Medline, Compendex, PsycINFO, and the Philosopher’s Index using a set of keywords selected to identify Twitter-related research papers that reference ethical concepts. Our initial set of queries identified 342 references across the four bibliographic databases. We screened titles and abstracts of these references using our inclusion/exclusion criteria, eliminating duplicates and unavailable papers, until 49 references remained. We then read the full text of these 49 articles and discarded 36, resulting in a final inclusion set of 13 articles. Ethical concepts were then identified in each of these 13 articles. Finally, based on a close reading of the text, a taxonomy of ethical concepts was constructed based on ethical concepts discovered in the papers.ResultsFrom these 13 articles, we iteratively generated a taxonomy of ethical concepts consisting of 10 top level categories: privacy, informed consent, ethical theory, institutional review board (IRB)/regulation, traditional research vs Twitter research, geographical information, researcher lurking, economic value of personal information, medical exceptionalism, and benefit of identifying socially harmful medical conditions.ConclusionsIn summary, based on a review of the literature, we present a provisional taxonomy of public health surveillance-related ethical concepts that emerge when using Twitter data.     

Disclosing incidental findings in genetics contexts: A review of the empirical ethical research

The disclosure of incidental findings, also called unsolicited findings, unexpected results, and secondary variants, is increasingly recognised as an issue in clinical and research genetics contexts. The rise of next generation sequencing methods has only intensified the issue, increasing the likelihood of incidental findings appearing. This review focuses on empirical research on the ethical issues involved. Electronic databases were searched for articles covering quantitative and qualitative research on the ethical issues involved in the disclosure of incidental findings in clinical and research genetics contexts. 16 articles were ultimately accepted for review. Data was extracted and synthesised on the factors that should be taken into account during the decision-making process surrounding the disclosure of an incidental finding in a genetics context. These factors include the possibility of disclosure, various practical and technical factors, and various ethical factors. We suggest the development of a decision-making tree, involving an exploration of the practical and ethical concerns raised by the studies. This is in our view the best way of handling the wide variety of both possible incidental findings and parties interested in the disclosure of incidental findings.     

Hybrid Research Models: Natural Opportunities for Examining Mental Health in Context

The articles in this series promote hybrid research models to bridge the gap between efficacy and effectiveness. We suggest that efforts such as those described in these articles are long overdue. Given the enormous public health consequences of the lack of available and effective mental health services, we no longer can afford research that neglects the natural state of affairs or that leaves others to translate research into practice. It is time to acknowledge that the process of testing interventions in the university for transfer to the community is neither efficient nor empirically justified. Guided by the articles in this series, we focus on the ways in which hybrid models can provide natural opportunities to advance the field and lead to a new generation of research that is both contextually relevant and methodologically rigorous. An iterative process of research and practice is proposed that can lead to stronger theories and methods and enhanced understanding of mental health in context.     

Reporting of demographics, methodology, and ethical procedures in journals in pediatric and child psychology.

OBJECTIVE: To identify potential problems in methodology reporting that may limit research interpretations and generalization. METHODS: We examined the rates at which articles in four major journals publishing research in pediatric, clinical child, and child psychology report 18 important demographic, methodological, and ethical information variables, such as participants' gender, socioeconomic status, ethnicity, inclusion/exclusion criteria, and consent and assent procedures. RESULTS: Overall, participants' ages, genders, and ethnicity were reported at moderate to high rates, whereas socioeconomic status was reported less often. Reports of research methodology frequently did not include information on how and where participants were recruited, the participation/consent rates, or attrition rates. Consent and assent procedures were not frequently described. CONCLUSIONS: There is wide variability in articles reporting key demographic, methodological, and ethical procedure information. Necessary information about characteristics of participation samples, important for drawing conclusions, is lacking in the flagship journals serving the child psychology field.     

Toward New Models for Research, Community, and Consumer Partnerships: Some Guiding Principles and an Illustration

This article comments on four articles in this Special Issue pertaining to collaborative partnerships in community-based child mental health research. Several guiding principles are reviewed, and illustrations are provided based on the Research Evaluation and Training partnership between the University of Hawaii and the Hawaii Department of Health.     

The amount of information provided in articles published in clinical anatomy and surgical and radiologic anatomy regarding human cadaveric materials and trends in acknowledging donors/cadavers

Aim

Appreciating the contribution of donor-cadavers to medical education is a well observed practice among anatomists. However, the appreciation of their contribution in research and scientific articles remains dubious. We aimed to evaluate how much data anatomists provide about specimens they have used and how frequently anatomists acknowledge their cadavers in published articles.

Materials and methods

We evaluated all articles performed on human cadaveric specimens that were published in Clinical Anatomy and Surgical and Radiologic Anatomy between January 2011 and December 2015. We evaluated how much data on the demographics, preservation method(s), source, and ethical/legal permissions regarding cadavers were provided. We also evaluated the number of articles that acknowledged donor-cadavers.

Results

The majority of articles provided demographic data (age and sex) and preservation method used in the article. The source of the specimens was not mentioned in 45.6 % of the articles. Only 26.2 % of the articles provided a degree of consent and only 32.4 % of the articles reported some form of ethical approval for the study. The cadavers and their families were acknowledged in 17.7 % of the articles. We observed that no standard method for reporting data has been established.

Conclusions

Anatomists should collaborate to create awareness among the scientific community for providing adequate information regarding donor-cadavers, including source and consent. Acknowledging donor-cadavers and/or their families should also be promoted. Scientific articles should be used to create a transparent relationship of trust between anatomists and their society.

     

Ethical, legal and social issues of genetic studies with African immigrants as research subjects

There is growing interest in exploring gene-environment interactions in the etiology of diseases in immigrants from sub-Saharan Africa. Our experience working with the Sudanese immigrant population in Omaha, NE, makes clear the pressing need for geneticists and federal and local funding agencies to address the ethical, legal and social implications of genetic research with such vulnerable populations. Our work raises several questions. How does one design research with African immigrant participants to assure it is ethical? Many immigrants may not understand the purposes, risks and benefits involved in research because of low literacy rates, one of the results of civil wars, or concepts of biologic science foreign to their cultures. Is it possible to obtain truly informed consent? Do African immigrants perceive genetic research using them as subjects as racist? Is genetic research on minorities "biopiracy" or "bio-colonialism?" In our experience, some Sudanese immigrants have challenged the legality and ethics of genetic studies with profit-making as an end. We have concluded that it is essential to educate African immigrant or any other non-English-speaking immigrant participants in research using lay language and graphic illustrations before obtaining consent. Cultural proficiency is important in gaining the trust of African immigrants; profit-sharing may encourage their participation in genetic research to benefit all; involvement of African immigrant community leaders in planning, delivery and evaluation using the community-based participatory research approach will facilitate healthcare promotion, health literacy education, as well as genetic research. It is crucial to address the ethical, legal and social implications of genetic studies with African immigrants as research subjects.     

IV. Stem cells

These pages contain guidelines and other articles compiled byESHRE Special Interest Groups and others, and agreed by theEHSRE Executive Committee. They are not submitted to journalpeer review. In this fourth statement of the ESHRE Taskforce on Ethics andLaw, the focus is on ethical issues raised by the possible therapeuticuse of stem cells, and in particular from embryo stem cells.General ethical principles are discussed, including autonomy,beneficience, maleficience and freedom of research. Specificpoints are raised concerning the source of embryos for stemcells and of oocytes for somatic cell nuclear transfer.     

Paradigms in aging research: a critical review and assessment

This is the first in a series of articles in which we intend to critically review some of the currently used models in gerontology research and evaluate their contribution to advancing our understanding of the phenomenon of senescence. The major theories of aging are considered. We discuss what makes a model useful in general and for aging research in particular. We suggest criteria for the selection of paradigms for the study of aging. The criteria we suggest for identifying underlying mechanisms that lead to age related changes are: intraspecies universality, intrinsicality, progressiveness, and interspecies universality. The subsequent articles of this series shall consider the merits and possible drawbacks of some of the most commonly used models of the biology of aging: (a) the yeast Saccharomyces cerevisiae; (b) the nematode, Caenorhabditis elegans and the fruitfly, Drosophila melanogaster; (c) mammalian cells in culture and telomerase model; (d) mitochondria and aging; (e) progeroid syndromes; (f) in vivo studies with laboratory rodent strains; and (g) plant senescence.     

Evidence-Based Psychosocial Treatments for Children and Adolescents With Attention Deficit/Hyperactivity Disorder

The purpose of this research was to update the series of articles on evidence-based treatment for children and adolescents with attention deficit/hyperactivity disorder that have appeared in this journal (Evans, Owens & Bunford, 2014; Pelham & Fabiano, 2008; Pelham, Wheeler, & Chronis, 1998). We completed a systematic review of the literature published between 2012 and 2016 to establish levels of evidence for psychosocial treatments for these youth. We identified articles using criteria established by the Society of Clinical Child and Adolescent Psychology using keyword searches of abstracts and titles. Articles were classified according to a modified version of the Division 12 task force guidelines that was used in other reviews in this series. The results revealed that findings are becoming increasingly nuanced with variations in levels of evidence related to ages of the children and characteristics of the specific treatment. In addition, we focused our critique on generalization of treatment effects across settings and time and on sample diversity (with regard to ethnicity and levels of parent education) in relation to the population. Children of parents with higher levels of education than average appear to be overrepresented in the literature. Implications for future treatment development and evaluation and for dissemination research are discussed.     

Adolescent psychotherapy: an introduction

Adolescent psychotherapy has only recently taken hold as distinct from either child or adult psychotherapy. This new recognition was born of necessity as practitioners saw that theories and techniques developed for treating children and adults were far less effective for treating adolescents. As necessity is often the mother of invention, new models for treating adolescents have emerged. While these models differ in many respects, they share three characteristics: the unique features of adolescents, psychotherapists requiring specialized knowledge and skills, and the need for adolescent psychotherapy to involve the broader systemic context of the adolescent's life. The articles in this issue of In Session: Journal of Clinical Psychology insist that practitioners recognize and challenge their assumptions about how psychotherapy with adolescents should be conducted. The articles highlight the need for specialized training, the scarcity of evidenced-based research, and the ethical dilemmas that frequently occur when working with this population.     

A systematic review of empirical research into ethics in general practice.

Much of the bioethical literature addresses the problems of tertiary medicine, with little attention to the daily concerns of general practitioners (GPs). The present review assesses the current state of research into the range and nature of ethical issues for GPs, looking specifically at the content of the research, the methods employed, and the philosophical framework of the research. A systematic search of MEDLINE, CINAHL, and Sociofile identified nine articles which form the basis for this review. The majority of the research reviewed here is quantitative in nature, using hypothetical cases with closed questions and categorical responses. No consistently significant variables were identified. Decisions appear to be inconsistent in terms of theoretical models and moral psychology. Ethical issues of concern to GPs differed from those commonly reported in the bioethical literature. There is a paucity of research into the ethical concerns of general practice. The existing body of research is quantitative in nature, leaving many unanswered questions concerning the reasons behind the decisions of GPs. There is a need for qualitative studies to further our understanding of this area.     

Introduction to the special section on suicide and nonsuicidal self-injury: a review of unique challenges and important directions for self-injury science

Self-injurious behaviors, including nonsuicidal self-injury (NSSI) and suicidal behaviors, are remarkably prevalent and woefully understudied. This area of research involves numerous methodological, ethical, and practical challenges that have limited progress in understanding some of the most basic characteristics and correlates of self-injurious behavior. To date, relatively little data are available to develop empirically based preventions or interventions, and no empirically supported treatments currently are available to reduce NSSI or suicidality in most populations. The articles in this special section offer examples of methodologically innovative, theoretically based work that address these research needs. Articles in this special section include studies of functional models of NSSI, studies that examine more distal risk factors for NSSI, and studies of suicidality. A brief review of current research in these areas is offered.     

Charting ELSI’s future course: lessons from the recent past

PurposeWe sought to examine the ethical, legal, and social implications (ELSI) literature research and scholarship types, topics, and contributing community fields of training as a first step to charting the broader ELSI community’s future priorities and goals.MethodsWe categorized 642 articles and book chapters meeting inclusion criteria for content in both human genetics or genomics and ethics or ELSI during a 5-year period (2003–2008) according to research and scholarship types, topics, and the area of advanced training of the first-listed author. Research and scholarship type categories were developed and characterized through in-depth review of 95 randomly sampled publications from the larger group.ResultsThere is a single dominant approach to ELSI, which focuses on ethical and other social issues “downstream” of advances in genomics, the contributors to which predominately have advanced training in medicine or science fields other than social science. A comparatively low percentage of publications primarily offer policy recommendations, and these are much more likely to be written by those with advanced training in law than is the case for the literature as a whole. Social science studies predominately employ qualitative methods and vary significantly with respect to the extent and types of recommendations offered. Two further types of ELSI research and scholarship offer alternative models for so-called “normative” work in this field.ConclusionConsidering topics, training, and types of ELSI research and scholarship from the most recent past allows for a baseline perspective that is sorely needed in charting this field’s future course.Genet Med 2012:14(2):259–267     

To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

Any test that produces visual images or digital or genetic sequences will tend to produce incidental findings because more will be visible than what was originally sought. We conducted a systematic review of the ethical reasons presented in the literature for and against the disclosure of incidental findings arising in clinical and research genetics contexts. A search of electronic databases resulted in 13 articles included for systematic review. Articles presented reasons for and against disclosure, and reasons for proceeding with caution when making decisions about disclosure. One major recommendation of the reviewed articles is in favor of qualified disclosure: incidental findings with confirmed clinical utility where there is the possibility of treatment or prevention should be disclosed, with exceptions. A second type of recommendation is that disclosure should proceed with caution, especially in the context of new genetic technologies and genetic testing involving minors. It is also recommended that the number of possible incidental findings be limited even before genetic testing is carried out. Such a policy, which we advocate, would show preference for non-disclosure.