Promoting ethical research practices: perspectives from pediatric populations.

Engaging in research activities can be an enriching aspect of one's professional career. Research serves to advance the knowledge base from which clinical decisions are founded and is the responsibility of all who provide clinical services. That is, developing and advancing this knowledge base is everyone's responsibility, whether as consumers of research or as direct contributors of research. Understanding the ethical issues that embrace the research enterprise is a complementary responsibility of professionals. Conducting research within an ethical framework is essential to maintaining integrity and credibility in science. Opportunities to promote scientific integrity are particularly relevant when conducting or examining research involving children. Therefore, the purpose of this article is to provide an overview of the role of research in clinical practice, particularly in an environment with pediatric populations. The article will unfold with three major themes: (1) understanding the value of research in the clinical environment, (2) describing factors that contribute to sound ethical practices, and (3) promoting integrity in research conducted with pediatric populations.

A study of residual lesions in horses that recovered from clinical signs of chronic equine dysautonomia.

BACKGROUND: Equine dysautonomia (ED) causes degeneration and loss of autonomic neurons. Approximately 50% of chronic cases recover, but it is unclear how they survive neuronal loss. OBJECTIVES: To assess lesions, autonomic neuron numbers, interstitial cells of Cajal (ICC), and neurodegeneration in recovered cases. ANIMALS: Thirteen cases (group ED), euthanized 10.3 ± 5.2 (1-16) years from diagnosis and 6 age-matched controls (group C). METHODS: Prospective, case control; routine post mortem examination, neuron counts in peripheral and enteric ganglia and immunohistochemical assessment of neural networks (Protein gene product [PGP] 9.5), ICC (c-kit), and neurodegeneration (beta-amyloid precursor protein and ubiquitin) in intestine. RESULTS: Postmortem findings in group ED were small intestinal dilation (4/12, 33%) and muscular hypertrophy (4/12, 33%), and gastric mucosal hypertrophy (3/11, 27%) and ulceration (4/11, 36%). Neuron density was lower in group ED (mean 39% lower for cranial cervical ganglion [P < .001], median 44% lower in celiacomesenteric ganglion [P = .01]). In intestine, neuronal depletion was worst in ileum (median 100% lower in submucosal plexus [P < .001], 91% lower in myenteric plexus [P = .004]). Group ED had less PGP 9.5 staining in ileal myenteric plexus (mean 66% lower [P = .04]) and circular muscle (median 75% lower [P = .006]). In ileum, there was less c-kit staining in myenteric plexus (median 57% lower [P = .02]) but not muscularis externa. Beta-amyloid precursor protein and ubiquitin results were not indicitive of neurodegeneration. CONCLUSIONS AND CLINICAL IMPORTANCE: Intact ICC in muscularis externa might help maintain motility after neuronal loss. Treatment supporting ICC function warrants investigation.

Low-dose acetaminophen induces early disruption of cell-cell tight junctions in human hepatic cells and mouse liver.

Dysfunction of cell-cell tight junction (TJ) adhesions is a major feature in the pathogenesis of various diseases. Liver TJs preserve cellular polarity by delimiting functional bile-canalicular structures, forming the blood-biliary barrier. In acetaminophen-hepatotoxicity, the mechanism by which tissue cohesion and polarity are affected remains unclear. Here, we demonstrate that acetaminophen, even at low-dose, disrupts the integrity of TJ and cell-matrix adhesions, with indicators of cellular stress with liver injury in the human hepatic HepaRG cell line, and primary hepatocytes. In mouse liver, at human-equivalence (therapeutic) doses, dose-dependent loss of intercellular hepatic TJ-associated ZO-1 protein expression was evident with progressive clinical signs of liver injury. Temporal, dose-dependent and specific disruption of the TJ-associated ZO-1 and cytoskeletal-F-actin proteins, correlated with modulation of hepatic ultrastructure. Real-time impedance biosensing verified in vitro early, dose-dependent quantitative decreases in TJ and cell-substrate adhesions. Whereas treatment with NAPQI, the reactive metabolite of acetaminophen, or the PKCα-activator and TJ-disruptor phorbol-12-myristate-13-acetate, similarly reduced TJ integrity, which may implicate oxidative stress and the PKC pathway in TJ destabilization. These findings are relevant to the clinical presentation of acetaminophen-hepatotoxicity and may inform future mechanistic studies to identify specific molecular targets and pathways that may be altered in acetaminophen-induced hepatic depolarization.

Reminiscence group activities and discourse interaction in Alzheimer's disease.

Reminiscence is an enriching and complex experience having many purposes and functions when used with patients with Alzheimer's disease (AD). Discourse is a component of language that has been shown to decline in patients with AD (Mentis, Briggs-Whittaker, & Gramigna, 1995). This article represents one of the first studies to examine the effects of reminiscence group (RG) activities on discourse interactions in patients with AD. This article specifically addresses the AD population within a RG setting. Observations suggested that objective ratings of conversational discourse would be better (less impaired) in patients with AD when obtained in relatively unstructured environments (e.g., during RG activity) as compared to ratings obtained in conversational environments imposing more structure (e.g., a session in which language function was being evaluated). Comparisons made of conversational and narrative discourse skills observed during different testing environments in patients with AD revealed predicted outcomes. That is, discourse elicited in an environment that was less structured yielded qualitatively better discourse patterns, particularly related to selecting and maintaining a topic, requesting additional information about a topic, changing a topic during conversation, and turn-taking. Results are discussed in terms of their relevance to gerontological nurses managing patients with AD.

Research integrity in communication sciences and disorders: preface.

PURPOSE: A joint program on Research on Research Integrity sponsored by the National Institute of Neurological Disorders and Stroke and the Office of Research Integrity encouraged the examination of practices and policies promoting the responsible conduct of research (RCR). The authors' grant--Research Integrity in ASHA: Education and Publication--enabled American Speech-Language-Hearing Association's (ASHA) Research Integrity Grant Group to (a) identify patterns of teaching and learning in Communication Sciences and Disorders graduate programs about specific topics of research integrity on the conduct of science, (b) examine perceptions about concepts of research integrity as they apply to scientific journals within the discipline, and (c) evaluate policies and practices established by ASHA to protect the integrity of published scientific work. METHOD: The authors reviewed historical and contemporary literature, conducted surveys, and analyzed ASHA policies. CONCLUSION: This supplement of the Journal of Speech, Language, and Hearing Research has been written with the aim of informing and inspiring scientists, students, research institutions, and professional societies to practice responsible research in the 21st century and beyond.

Research Integrity in Communication Sciences and Disorders.

PURPOSE: A joint program on "research on research integrity" sponsored by the National Institute of Neurological Disorders and Stroke (NINDS) and the Office of Research Integrity (ORI) encouraged the examination of practices and policies promoting the responsible conduct of research (RCR). Our grant, Research Integrity in ASHA: Education and Publication (#NS44534), enabled ASHA's Research Integrity Grant Group (a) to identify patterns of teaching and learning in communication sciences and disorders graduate programs about specific topics of research integrity on the conduct of science, (b) to examine perceptions about concepts of research integrity as they apply to scientific journals within the discipline, and (c) to evaluate policies and practices established by ASHA to protect the integrity of published scientific work. METHOD: Historical and contemporary literature were reviewed, surveys were conducted, and ASHA policies were analyzed. CONCLUSION: This JSLHR supplement has been written with the aim of informing and inspiring scientists, students, research institutions, and professional societies to practice responsible research in the 21st century and beyond.

Ethical principles associated with the publication of research in ASHA's scholarly journals: importance and adequacy of coverage.

PURPOSE: The purpose of this 2-part study was to determine the importance of specific topics relating to publication ethics and adequacy of the American Speech-Language-Hearing Association's (ASHA's) policies regarding these topics. METHOD: A 56-item Web-based survey was sent to (a) ASHA journal editors, associate editors, and members of the Publications Board (Group 1); (b) authors, reviewers, and members of ASHA's Board of Ethics (Group 2); and (c) a random sample of the ASHA membership, characterized as journal readers (Group 3). The survey contained 4 questions related to ethical principles associated with the publication of research: (a) In regard to scientific integrity in research publications in general, how important is the issue of [topic]? (b) Should ASHA publication policies address this issue? (c) Do ASHA policies address this issue? (d) If yes, how adequately do ASHA policies address this issue? A second study evaluated the contents of ASHA's publication policy documents in regard to their coverage of the survey topics. RESULTS: Results indicated many of the topics deemed most important by all groups were included in ASHA's publication policy documents; other topics, although included, were not adequately addressed. CONCLUSIONS: ASHA needs a single, unifying publication policy document, and increased education of all groups in the realm of ethics in the publication process is indicated.

Responsible conduct of research in communication sciences and disorders: faculty and student perceptions.

PURPOSE: Two Web-based surveys (Surveys I and II) were used to assess perceptions of faculty and students in Communication Sciences and Disorders (CSD) regarding the responsible conduct of research (RCR). METHOD: Survey questions addressed 9 RCR domains thought important to the responsible conduct of research: (a) human subjects protections; (b) research involving animals; (c) publication practices and responsible authorship; (d) mentor/trainee responsibilities; (e) collaborative science; (f) peer review; (g) data acquisition, management, sharing, and ownership; (h) conflicts of interest; and (i) research misconduct. Respondents rated each of 37 topics for importance and for sufficiency of instructional coverage. RESULTS: Respondents to Survey I were 137 faculty members from 68 (26%) of the 261 graduate programs in CSD. By comparison, 237 students from 39 (15%) programs responded to Survey II. Data about the importance and sufficiency of coverage of each of the 37 items were transformed into z scores to reveal relative ratings among the 37 topics. Data presentations were grouped for topics in each of the 9 RCR domains. Ratings indicated the relatively high importance assigned among the 37 topics by CSD faculty and students. Sufficiency of coverage of those same topics received lower ratings. CONCLUSIONS: The results of these surveys support the notion that students in CSD perceive that they are receiving information about RCR. The data pertaining to sufficiency of coverage provide a basis for improving instruction in this important aspect of research education.