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Objective To describe health‐care personnel's (HCP's) perceptions of the ethical climate at their workplace in paediatric oncology. Methods A cross‐sectional survey was conducted using the Swedish version of the shortened Hospital Ethical Climate Survey (HECS‐S). HCP at all six paediatric oncology centres (POCs) in Sweden were invited to participate. Analysis included descriptive statistics, the Mann‐Whitney U test (differences between groups) and Spearman's rank correlation. Informed consent was assumed when the respondents returned the survey. Results A high response rate was achieved as 278 HCP answered the questionnaire. Medical doctors perceived the ethical climate to be more positive than registered nurses and nursing assistants. At the POC with the significantly lowest values concerning immediate manager, no significant correlation with the other items was found. At the POC with the poorest ethical climate, HCP also had the lowest perception of the possibility of practicing ethically good care. Conclusions Differences between centres and professional groups have been demonstrated. A negative perception of the immediate manager does not necessarily mean that the ethical climate is poor, but the manager's ability to provide the conditions for an open dialogue within the health‐care team is key to achieving an ethical climate.

The Russian Radiobiological Human Tissue Repository (RHTR) at the Southern Urals Biophysics Institute in Ozyorsk, Russia, was established to collect and store biospecimens supporting research on health consequences of chronic, low-dose radiation exposures. The purpose of this paper is to describe the RHTR resources and the availability of high-quality biological specimens. RHTR has enrolled two groups of subjects from 1951 to the present time: exposed workers at the Mayak Production Association facilities and residents of Ozyorsk who were never occupationally exposed to ionizing radiation (controls). Biospecimens are collected with informed consent of participants and are annotated with demographic, occupational, dosimetry and medical information. To date, 900 individuals have provided surgical tissues and 1000 have provided autopsy tissues. Blood samples are also collected and stored. Familial DNA is available from parent–offspring triads. Biospecimens and annotated data are available to interested scientists worldwide, via the RHTR website.

Background and aim: As non-randomised studies have suggested that surgical decompression may reduce mortality in patients with space occupying hemispheric infarction, randomisation may be considered unethical in controlled trials testing this treatment strategy. We studied differences in recall of information and in appreciation of the informed consent procedure between representatives included in the Hemicraniectomy After Middle cerebral artery infarction with Life-threatening Edema Trial (HAMLET) and representatives of patients participating in the randomised trial of Paracetamol (Acetaminophen) In Stroke (PAIS). Methods: 1 year after study inclusion, we contacted 30 consecutive representatives who had given informed consent for participation of their relative in HAMLET, and 30 for PAIS. Recall of trial details and appreciation of the informed consent procedure were investigated using standardised questionnaires and compared between the two groups. Results: All 30 PAIS representatives and 28 HAMLET representatives were interviewed. Participation of their relative in a clinical trial was remembered by 86% of HAMLET and 40% of PAIS representatives (p

Chronic severe pain following inguinal hernia repair is a significant post-operative problem. Its exact cause and lack of evidence-based treatment path present problems in the effective management of this surgical complication. We retrospectively reviewed the records of patients diagnosed with chronic pain following open inguinal hernia repair between November 1995 and November 2000, who were under the care of the senior author. Over the five-year period, 146 patients underwent inguinal hernia repair. 88 (60%) had suture repair (darnmodified Bassini's) and 58 (40%) underwent a Lichtenstein mesh repair. Thirteen patients (9%), (3 in suture vs. 10 in mesh group, p = 0.004) developed chronic severe pain. Examination revealed maximal tenderness over the genitofemoral nerve (GF) distribution (n = 5), over the medial end of the scar (n = 3), over the pubic tubercle (n = 1) and in the ilioinguinal nerve distribution (n = 1) No abnormality was detected on clinical examination in the cases of three patients. Treatment involved GF nerve block (n = 5), local injection of Chirocaine and Methylprednisolone acetate into the medial end of the scar (n = 3), Chirocaine and Methylprednisolone acetate into the pubic tubercle (n = 1), ilioinguinal nerve block (n = 1), re-exploration with re-suturing of the mesh (n = 1), and Amitriptyline (n = 2). At a median follow up of 45 months (range: 24-87), 10 (77%) are completely pain free; two (15.4%) had mild pain and one patient still has significant persistent pain. To conclude, chronic severe pain occurred in nine percent of patients following primary open inguinal hernia repair. The majority of patients were successfully treated by therapeutic injection into the point of maximal tenderness.

Aims: This study assessed parent knowledge of newborn screening (NBS) and parent attitudes toward NBS for untreatable conditions, NBS for late-onset disorders and informed consent in NBS. Methods: Seventeen qualitative focus groups were held in Alaska, California, Hawaii, and Washington with mothers of children 10 years old or younger. Results: Most participants did not recall receiving information about NBS, and all wanted this information prenatally. In addition, most felt that the current system of ‘informed dissent’ was adequate, provided they were told about NBS prior to delivery. All women supported NBS for conditions that occur in infancy without a proven treatment. However, they disagreed about NBS for disorders that manifest in late childhood or adulthood. Conclusions: The results show a general consensus among the focus group participants about issues that cause dissent among public health and health care professionals. Parent attitudes differ from those of many professional communities with regard to timing of NBS education, informed consent, NBS for disorders that lack an effective treatment, and predictive testing of children for late-onset disorders. The results highlight the need to further research parent opinions about expanded NBS using new technologies and to include parents in the development of NBS policies.

We examined participants' reading and recall of informed consent documents presented via paper or computer. Within each presentation medium, we presented the document as a continuous or paginated document to simulate common computer and paper presentation formats. Participants took slightly longer to read paginated and computer informed consent documents and recalled slightly more information from the paginated documents. We concluded that obtaining informed consent online is not substantially different than obtaining it via paper presentation. We also provide suggestions for improving informed consent--in both face-to-face and online experiments.

Objective: To assess communication between vascular neurosurgeons and their patients with unruptured cerebral aneurysms about treatment options and expected outcomes. Methods: Vascular neurosurgeons and their patients with cerebral aneurysms were surveyed immediately following outpatient appointments in a neurosurgery clinic. Data collected included how well the patient understood their aneurysm treatment options, the risks of a poor outcome from various treatments, and the consensus “best” treatment. Patient and neurosurgeon responses were measured using Likert scales, multiple choice questions, and visual analogue scales. Agreement between patient and neurosurgeon was assessed with kappa scores. The Wilcoxon sign rank test was used to compare visual analogue scale responses. Results: Data for 44 patient–neurosurgeon pairs were collected. Only 61% of patient–neurosurgeon pairs agreed on the best treatment plan for the patient’s aneurysm (κ = 0.51, moderate agreement). Among the neurosurgeons, agreement with their patients ranged from 82% (κ = 0.77, almost perfect agreement) to 52% (κ = 0.37, fair agreement). Patients estimated much higher risks of stroke or death from surgical clipping, endovascular embolisation, or no intervention compared with the estimates offered by their neurosurgeons (surgical clipping: patient 36% v neurosurgeon 13%, p v neurosurgeon 19%, p = 0.040; and no intervention: patient 63% v neurosurgeon 25%, p Conclusions: Following consultation with a vascular neurosurgeon, many patients with cerebral aneurysms have an inaccurate understanding of their aneurysm treatment plan and an exaggerated sense of the risks of aneurysmal disease and treatment.