SEARCH · PubMed Health

Results for “Code of Conduct for Research involving Humans”

Explore indexed PubMed citations for clinical trials, systematic reviews and public health research. Read source abstracts and follow each citation to its original PubMed record.

Quote a phrase for an exact phrase match. Source license links do not imply unrestricted reuse.

At least 127 records · Page 7Linked to original sources

PubMed2000

Eye fields in the frontal lobes of primates.

Two eye fields have been identified in the frontal lobes of primates: one is situated dorsomedially within the frontal cortex and will be referred to as the eye field within the dorsomedial frontal cortex (DMFC); the other resides dorsolaterally within the frontal cortex and is commonly referred to as the frontal eye field (FEF). This review documents the similarities and differences between these eye fields. Although the DMFC and FEF are both active during the execution of saccadic and smooth pursuit eye movements, the FEF is more dedicated to these functions. Lesions of DMFC minimally affect the production of most types of saccadic eye movements and have no effect on the execution of smooth pursuit eye movements. In contrast, lesions of the FEF produce deficits in generating saccades to briefly presented targets, in the production of saccades to two or more sequentially presented targets, in the selection of simultaneously presented targets, and in the execution of smooth pursuit eye movements. For the most part, these deficits are prevalent in both monkeys and humans. Single-unit recording experiments have shown that the DMFC contains neurons that mediate both limb and eye movements, whereas the FEF seems to be involved in the execution of eye movements only. Imaging experiments conducted on humans have corroborated these findings. A feature that distinguishes the DMFC from the FEF is that the DMFC contains a somatotopic map with eyes represented rostrally and hindlimbs represented caudally; the FEF has no such topography. Furthermore, experiments have revealed that the DMFC tends to contain a craniotopic (i.e., head-centered) code for the execution of saccadic eye movements, whereas the FEF contains a retinotopic (i.e., eye-centered) code for the elicitation of saccades. Imaging and unit recording data suggest that the DMFC is more involved in the learning of new tasks than is the FEF. Also with continued training on behavioural tasks the responsivity of the DMFC tends to drop. Accordingly, the DMFC is more involved in learning operations whereas the FEF is more specialized for the execution of saccadic and smooth pursuit eye movements.

Animals↗

PubMed2006

Young urban women's patterns of unprotected sex with men engaging in HIV risk behaviors.

This study explored reasons women engaged in unprotected sex with male partners they distrusted and perceived to engage in HIV risk behaviors. Seven focus groups were held in public housing and neighborhood centers in the urban Northeast with 43 African American and Latina women. Content analysis was conducted by open and axial coding. Barrett's theory of power as knowing participation in change and sex script theory guided interpretation. Results indicated that Patterns of Unprotected Sex is a usual practice to maintain hope, sensuality, intimacy, strategic gain, and stability with a male partner. In low power sex scripts the salient risks of HIV were buried under an awareness of oneself as having to satisfy a man and accept cheating. High power sex scripts involved women's awareness of themselves as worthy of self care with diverse choices. High power scripts can be integrated into normative sex scripts as exemplars of more powerful ways of being and acting to reduce HIV risk.

Association Learning↗

PubMed1982

[The problems involved in outcome control of non-industrial vocational rehabilitation measures].

The Social Code prescribes to the institutions financially responsible for rehabilitation to use their budgetary funds in accord with the principles of cost-effective and economical conduct, and to set up cost-benefit analyses in appropriate cases. This, however, presupposes a close and trusting working relationship between the financially responsible institutions and the rehabilitation facilities. It is possible to apply cost-benefit analysis to vocational rehabilitation; however, only those data should be included in the assessment that can in fact be clearly quantified. To ward off the danger of vocational rehabilitation missing labour market demands, improved statistical accessibility is recommended. The financially responsible institutions and the labour administration should draw up an overall statistical survey of rehabilitation--possibly in the form of a "rehabilitation report"--, containing break-downs of labour market statistics for comparison. This would facilitate vocational rehabilitation being accompanied and evaluated by research, the results obtained would be more obvious and clear. Improved prediction as regards employment opportunities of the rehabilitees could result.

Cost-Benefit Analysis↗

PubMedDate not supplied

A new approach to assessing ethical conduct in scientific work.

The intent of the current article is to describe the development of a new approach to the study of ethical conduct in scientific research settings. The approach presented in this article has two main components. The first component entails the development of a taxonomy of ethical events as they occur across a broad range of scientific disciplines. The second involves the identification of proximate criteria that will allow systematic and objective evaluation of ethical behaviors through low-fidelity performance simulations. Two proposed measures based on the new approach are intended to identify and measure variations in the scientific environment that might predispose certain individuals to make unethical decisions.

Biological Science Disciplines↗

PubMed1996

Combining multiple data bases for outcomes assessment.

Often, information from a single database cannot answer important clinical outcomes or research questions. This article describes efforts to link multiple databases to extract useful health care information. One project, conducted by the Keystone Peer Review Organization (KePRO), focused on the number of combined right and left heart catheterizations done in patients, who were admitted to the hospital for a diagnostic left heart catheterization, for primary coronary artery disease. The study linked data from hospital billing records, patient records, and insurance companies' records. Another effort involves two studies of Acute Myocardial Infarction (AMI) by KePRO and Pennsylvania Health Care Cost Containment Council. The final case study describes the Crash Outcomes Data Evaluations Systems (CODES) project, conducted by the Pennsylvania Department of Health. To determine if seat belts help to prevent injuries, cut costs, and save lives, it was necessary to build a complete record across multiple sights of care from the crash until final outcome. These examples illustrate the challenges and the advantages of using multiple databases to assess health care outcomes.

Accidents, Traffic↗

PubMed1999

Development of the Joint Protection Behavior Assessment.

OBJECTIVE: To develop an observational assessment of the use of joint protection (JP) methods by people with rheumatoid arthritis (RA). METHODS: Subjects with and without RA were videotaped performing a kitchen activity to identify the range of JP and non-JP methods used. Behavior codes were developed for these. Seven rheumatology occupational therapists reviewed and scored behaviors as correct, partially correct, or incorrect JP methods. Test-retest and interrater agreement studies were conducted. RESULTS: The Joint Protection Behavior Assessment (JPBA) demonstrated good content validity (kappa = 0.46 to 1.00), test-retest reliability (P < 0.0001), and interobserver agreement (kappa = 0.68 to 0.88). Construct validity was supported by significant correlations with hand impairment and function variables. CONCLUSION: The JPBA is a reliable and valid assessment of the use of JP methods by people with mild to moderate hand and upper limb joint involvement, which can be used to evaluate the effectiveness of JP education programs.

Activities of Daily Living↗

PubMed2001

Association study of CAG repeats in the KCNN3 gene in Japanese patients with schizophrenia, schizoaffective disorder and bipolar disorder.

To investigate a possible involvement of expanded triplet repeats of genome in the genomes of patients with endogenous psychoses, we examined a CAG repeat polymorphism in the coding region of the KCNN3 gene in schizophrenia, schizoaffective disorder, bipolar disorder and controls of the Japanese population. There were no significant differences in the CAG repeat number of longer or shorter alleles among the four diagnostic groups or among the schizophrenia hebephrenic and paranoid subtypes.

Adenine↗

PubMed1979

Basic ethical principles in the conduct of biomedical and behavioral research involving human subjects.

Moral postures concerning research involving human subjects are diverse in part because of the diversity of issues at stake in, for example, disputes over conflicts of rights and duties, concerning values, and with regard to duties to persons with interests in goods and values. I have presented three ethical principles around which to gather these questions: I) respect for human subjects as free agents; II) concern to foster the best interests of human subjects; and III) concern to maximize the benefits accruable to society. I have indicated that these three abstract considerations arise around four procedural foci for research involving humans: A) the requirement of free and informed consent of competent human subjects; B) the requirement of proxy consent from incompetent human subjects; C) the avoidance of coercion in the consent context; and D) an interest in having research involving humans redound to the general good of society. These are at best guidelines, or outlines, of the central ethical issues at stake. They must in each case of research be applied with care and followed with prudence. One can never have a means of simply deducing answers. Basic ethical principles represent, rather, our best attempt to map out the terrain of rights and values.

Behavior↗

PubMed2003

Large scale study of protein domain distribution in the context of alternative splicing.

Alternative splicing plays an important role in processes such as development, differentiation and cancer. With the recent increase in the estimates of the number of human genes that undergo alternative splicing from 5 to 35-59%, it is becoming critical to develop a better understanding of its functional consequences and regulatory mechanisms. We conducted a large scale study of the distribution of protein domains in a curated data set of several thousand genes and identified protein domains disproportionately distributed among alternatively spliced genes. We also identified a number of protein domains that tend to be spliced out. Both the proteins having the disproportionately distributed domains as well as those with spliced-out domains are predominantly involved in the processes of cell communication, signaling, development and apoptosis. These proteins function mostly as enzymes, signal transducers and receptors. Somewhat surprisingly, 28% of all occurrences of spliced-out domains are not effected by straightforward exclusion of exons coding for the domains but by inclusion or exclusion of other exons to shift the reading frame while retaining the exons coding for the domains in the final transcripts.

Alternative Splicing↗

PubMed1995

Charcot-Marie-Tooth type 1B neuropathy: third mutation of serine 63 codon in the major peripheral myelin glycoprotein PO gene.

We report studies on two patients (a mother and her daughter) presenting with a Charcot-Marie-Tooth type 1 (CMT1) phenotype: low nerve conduction velocities of 13-15 m/s and an early onset at the age of walking. DNA analysis of the gene coding for the major peripheral myelin protein PO showed a new point mutation in exon 2, which resulted in substitution of a phenylalanine for serine at amino acid position 63 of PO. This is the third mutation reported at this codon, the two previously described leading to CMT1B (serine 63 deletion), or to Dejerine-Sottas disease (cysteine for serine 63 substitution), suggesting that different phenotypes can result from alteration of a single amino acid, depending on the type of the change involved.

Adult↗

PubMed2006

'The biggest worry..': research findings on pain management for Aboriginal peoples in Northern Territory, Australia.

INTRODUCTION: Effective pain management is considered essential during end-of-life care, and is core work for the discipline of hospice and palliative care. However, although there is extensive literature on pain relief during end-of-life care for Caucasians, there are few articles that focus specifically on issues associated with pain management for Australian Aboriginal peoples. In order to address this dearth, the present article provides findings from a National Health and Medical Research Council two-year study on Aboriginal palliative care, conducted in the Northern Territory, that explored and documented issues associated with pain management for rural and remote Aboriginal peoples. METHODS: The data were collected through open-ended, qualitative interviews conducted with a cross-section of participants (consumers and health professionals) throughout the Northern Territory, Australia. There were a total of seventy-two interviews completed with a wide range of participants including patients (n = 10), carers (n = 19), Aboriginal health care workers (n = 11), healthcare professionals (n = 30) and interpreters (n = 2). The interviews were transcribed verbatim, coded and thematically analysed within a descriptive phenomenological framework. FINDINGS: To understand the problems of pain management it is important to appreciate many of the cultural practices and beliefs of Aboriginal peoples. A complexity of cultural relationship rules determine who should and should not be directly involved in providing physical care. Findings from the study show that Aboriginal peoples may have a higher threshold of pain and are less likely to complain - this is particularly so for men, who do not want to appear weak by expressing their pain. Key factors impacting on pain management are cultural concerns about 'blame' and 'pay back'. There is also a fear of Western medicine, stemming from a lack of understanding of clinical notions of pain relief, fear of the administration, side effects and ramifications of medications, and fear that Western pain medications will speed up the dying process and inhibit the passing on of traditional knowledge and secrets that occurs during end-of-life. Strategies posited for ensuring effective pain management include developing trust, timely involvement of the doctor for administering pain medication, provision of emotional support, information giving to decrease fear, provision of the 'right' information to the 'right' person and strengthening of health service provision. CONCLUSIONS: The insights provided by a diversity of Aboriginal peoples and the health professionals who care for them provide valuable wisdom with respect to the best way to ensure effective pain management is made available to Australia's first peoples. At the core of this information is the need for cultural sensitivity and respect.

Cultural Diversity↗

PubMedDate not supplied

Parental involvement and family-centered care in the diagnostic and treatment phases of childhood cancer: results from a qualitative study.

Few research studies have addressed the ways parents participate in their childs medical care, particularly in relation to the cancer experience. The purpose of this study was to explore parents descriptions of their participation in medical care for their children with cancer. For this study, seven focus groups were conducted with 45 parents of 26 children who had completed cancer treatment at least one year prior, and who were still alive. Data were coded using thematic analysis procedures. It was found that parents emphasized their role as advocates during the diagnosis and treatment phases, by informing themselves about their childrens medical conditions, making medical care decisions, limiting the actions of medical professionals, and affirming and supporting medical professionals. These results emphasize the need to employ a family-centered approach in cancer care medical settings, by fostering and supporting the active inclusion of parents in their child's treatment and management.

Academic Medical Centers↗

PubMed2003

Electrical alternans in long QT syndrome resembling a Brugada syndrome pattern.

Isolated T wave alternans (repolarization alternans) is frequently associated with long QT syndrome. However, electrical alternans involving the P wave, QRS complex, ST segment (depolarization alternans), and the T wave is a rare finding. This report describes a 62-year-old woman with long QT syndrome and an electrical alternans occurring after previous syncope. Alternating QRS complexes showed a prolonged PR interval, a Brugada syndrome resembling pattern of the QRS complexes (elevation and downslope of the ST segments), and a T wave alternans. A genetic basis for the long QT syndrome has been ruled out by sequencing of all coding areas of the LQT genes. Potential mechanisms for the electrical alternans are discussed.

Bundle-Branch Block↗

PubMedDate not supplied

On being new to an insurance plan: health care use associated with the first years in a health insurance plan.

BACKGROUND: We wanted to compare health care utilization and costs in the first year of being in a health insurance plan with those of subsequent years. METHODS: We used claims data from an independent practitioner association (IPA)-style managed care organization in the Rochester, NY, metropolitan area from 1996 through 1999. Cross-sectional and panel analyses of up to 4 years of claims data were conducted, involving 335,547 adult patients assigned to the panels of 687 primary care physicians (internists and family physicians). Multivariate analyses, adjusting for age, sex, case mix, and socioeconomic status derived from ZIP codes, examined the relationship between the first year of health insurance and Papanicolaou tests, mammograms in women older than 40 years, physician use, avoidable hospitalization, and expenditures. RESULTS: After multivariate adjustment, the first year of insurance was associated with a higher risk of not getting a mammogram, a higher risk of avoidable hospitalization, greater likelihood of visiting a physician, and higher expenditures, especially for testing. There was no relationship, however, between Papanicolaou test compliance and year of enrollment. CONCLUSIONS: The findings suggest there might be adverse clinical and financial implications associated with changing insurance.

Adult↗

PubMedDate not supplied

How students learn from community-based preceptors.

OBJECTIVE: To explore how students learn in community-based family physicians' offices from the student's point of view. METHOD: Each student completing a community-based family medicine clerkship wrote a "critical incident" narrative about an event that was particularly educational. A coding system was developed by a multidisciplinary research team and thematic analysis was conducted. RESULTS: Critical education experiences were brief, problem-focused, had definitive outcomes, were often collaborative, and led to self-reflection. The most commonly identified mode of learning was "active observation." In most of these situations, the student had significant clinical responsibility, but some involved observation of complex tasks beyond the expectations of a medical student. Most (77%) identified their learning needs after having observed a preceptor, rather than prospectively. Collaboration, coaching, advocacy, and exploring affect were means whereby preceptors and students created a learning environment that students felt was safe, allowed them to recognize their own learning needs, and helped them adopt new behaviors. CONCLUSIONS: These findings broaden the definition of active learning to include active observation and support learner-centered and relational models of learning. Increasing preceptors' awareness of these modes of student learning will enhance the quality of education in ambulatory settings.

Education, Medical, Graduate↗

PubMedDate not supplied

Communication and the patient/physician relationship: a phenomenological inquiry.

All interaction between patient and medical team is mediated through communication. In working with advanced cancer patients, troubled communication between the patient and healthcare team is sometimes evident. The current study examined the perspective of seven advanced cancer patients on this communication. The patients were under the care of an urban cancer research center, and each had expressed, at least once, a desire for hastened death. Using a phenomenological form of inquiry, serial, "in-depth semistructured" interviews were conducted (mean = 3; range = 2-6) at a place convenient to the patient. The interviews were audiotaped, transcribed, coded, and organized into themes. The study findings suggest that the most important aspects of communication between the advanced cancer patient and medical team at an urban cancer research center are the extreme vulnerability of the patient to both style and content of the communication; the extreme sensitivity of the communication itself, because it concerns issues vital to the patient; and the complexity of the communication, encompassing and expressing both verbal and non-verbal messages, as well as intended and unintended messages. Conflict inherent in almost all communication between patient and medical team involved disagreement about goals of care and the participants' perception of not being treated with respect. Harm caused to the participant by communication missteps included loss of hope, a sense of abandonment, and diminished feelings of personal dignity and worth. The findings may not be representative of advanced cancer patients being cared for in a different treatment setting.

Adult↗

PubMed2000

Cranial nerve involvement in CMT disease type 1 due to early growth response 2 gene mutation.

Mutations in the gene coding for the Schwann cell transcription factor early growth response 2 (EGR2), which seems to regulate myelinogenesis and hindbrain development, have been observed in few cases of inherited neuropathy. The authors describe a unique combination of cranial nerve deficits in one member of a Charcot-Marie-Tooth 1 family carrying an EGR2 mutation (Arg381His). This finding further supports the role of EGR2 in cranial nerve development.

Adult↗

PubMedDate not supplied

Spiritual needs of dying patients: a qualitative study.

PURPOSE/OBJECTIVES: To identify dying patients' definitions of spirituality and their spiritual needs. DESIGN: Descriptive, qualitative. SETTING: Participants' places of residence. SAMPLE: 19 hospice patients (10 females and 9 males), mean age 72, with a range of length of time as a hospice patient of 2 weeks to 12 months. METHODS: Semistructured interviews were conducted. Interview transcripts and field notes were analyzed to reduce data into codes and themes. Data were coded by extracting verbatim phrases used to describe spirituality and spiritual needs. Themes emerged from the data as commonalities among the codes developed. MAIN RESEARCH VARIABLES: Meaning of "spiritual" and perceived spiritual needs. FINDINGS: Participants initially defined spiritual as relating to God or religion; however, as interviews progressed, it was apparent that their spirituality was a part of their total existence. Twenty-nine unique spiritual needs were identified and grouped into six themes: need for religion, need for companionship, need for involvement and control, need to finish business, need to experience nature, and need for positive outlook. CONCLUSIONS: Participants perceived spirituality as a broad concept that may or may not involve religion. Spiritual needs were likewise broad in scope and were linked closely to purpose and meaning in life. IMPLICATIONS FOR NURSING PRACTICE: Spiritual care of dying patients is within the scope of nursing practice. Spiritual needs are quite varied and encompass more than religion. If nurses are to enhance the quality of life of dying patients, spiritual needs must be addressed.

Aged↗