Objective: This paper presents the results of the first public consultation for the creation of a large-scale genetic database, the Quebec CARTaGENE project. A consultation has been undertaken in order to gauge whether the general public is receptive to the project. An integral part of the approach of the researchers is to establish a dialogue with the public. Methods: Two independent expert groups have carried out qualitative and quantitative studies measuring knowledge of and interest in genetics, incentives and obstacles to CARTaGENE participation and comprehension and evaluation of the communication tools. Results: CARTaGENE is seen to hold promise for the greater population. However, reported across qualitative and quantitative studies is the concern for confidentiality and respect for the individual, transparency, the donor’s right to feedback and governance. Participation would be conditional on a response to those concerns and a greater dissemination of information. Conclusion: Community engagement in genetic research requires targeted communications, with an appropriate proportioning of information and communication, and a consideration of the ‘values and personal interests’ of individuals according to different societal segments.
BACKGROUNDThe authors assessed the biologic behavior of differentiated thyroid carcinoma in patients age 70 years or older and evaluated factors that influenced long‐term survival.METHODSAmong 1448 patients with differentiated thyroid carcinoma who were treated at the authors' institution over the past 60 years, 111 patients were identified who were age 70 years or older at the time of their initial diagnosis (range, 70–93 years). The authors conducted a retrospective analysis of the outcome of these 111 patients, who had a median follow‐up of 9 years (range, 2–9 years).RESULTSThere were 83 female patients and 28 male patients (female to male ratio, 3:1). Fifty‐eight tumors were papillary, 46 tumors were follicular, and 7 tumors were Hürthle cell carcinoma. Eighty percent of patients presented with a thyroid mass, and 70% of tumors were pathologic stage T3 (pT3) or pT4. Lymph node disease was evident at presentation in 44% of patients, and distant metastases were documented at diagnosis in 23% of patients. Forty‐six patients underwent total thyroidectomy, and the remaining patients underwent subtotal thyroidectomy or biopsy only. Radioiodine was administered to 80 patients, and external beam radiotherapy was administered to 19 patients. The cause specific survival rates were 75%, 50%, and 50% at 5 years, 10 years, and 15 years, respectively. Multivariate analysis showed that the presence of metastases was the most important independent prognostic factor for survival. External beam radiotherapy was associated with a poorer prognosis, in that it was reserved for patients with either inoperable disease or residual disease after surgery and patients with no uptake of radioiodine.CONCLUSIONSA large proportion of thyroid tumors showed extrathyroid spread and distant metastases, which frequently were not iodine‐avid. The prevalent histologic type was papillary, often with features of poor differentiation. Thyroid carcinoma in the elderly appears to behave more aggressively, and they have a less favorable prognosis compared with younger adults. Cancer 2003;97:2736–42. © 2003 American Cancer Society.DOI 10.1002/cncr.11410
CGMS appears to be a clinically useful tool to gain additional insights into the glycemic control of diabetic CAPD patients. More biocompatible and nonglucose-containing dialysis fluids seem to be associated with improvements in glycemic control in this group of patients.
Magnetic resonance imaging (MRI) is often championed in medical research circles because the modality is generally deemed safe and may be performed repeatedly. However, it is also clear that MRI research carries risks. As discussed in this paper, the legal and ethical standard for disclosure of risks in research requires that all known and foreseeable risks must be disclosed to the research participant or substituted decisionmaker. Given these two facts, one would expect that a clear, concise, and complete description of the risks of MRI would be available in the literature; however, this is not so. After a perusal of the literature, we could find only limited risk descriptions. While MRI risks have indeed been described in the literature, [1][2][3] ABSTRACT: Magnetic resonance imaging (MRI) procedures have been used for over 20 years. This modality is considered relatively safe and holds great promise. Yet, MRI has a number of risks. In order for MRI research to meet the Canadian standard of disclosure, the investigator must communicate and make note of all risks in their research protocols and consent forms. Those creating and reviewing research protocols and consent forms must take notice of the different circumstances under which MRI poses a risk. First, this paper will describe the current standard of disclosure in Canada for research participants. Second, the paper will provide a comprehensive synthesis of the known physical and psychological risks associated with MRI. Third, the paper will provide recommendations concerning areas for further investigation and risk reduction strategies. This information will thus equip researchers and research ethics boards (REBs) with the criteria needed for the composition of research protocols that meet the Canadian disclosure standard.RÉSUMÉ: Une analyse compréhensive des risques de la recherche en IRM, à l'appui de la divulgation complète. L'imagerie par résonance magnétique (IRM) est utilisée en clinique depuis plus de 20 ans. Elle est considérée relativement sûre et très prometteuse. Cependant l'IRM comporte certains risques. L'investigateur doit noter tous les risques dans ses protocoles de recherche et les indiquer dans les formulaires de consentement, afin que la recherche en IRM rencontre les standards canadiens sur la divulgation. Ceux qui élaborent les protocoles de recherche et les formulaires de consentement ainsi que ceux qui les révisent doivent signaler dans quelles conditions l'IMR comporte des risques. Cet article décrit d'abord les standards canadiens actuels de divulgation aux sujets de recherche, puis présente une synthèse extensive des risques physiques et psychologiques connus associés à l'IRM et enfin formule des recommandations, dans le corps de l'article et sous forme de table sommaire, concernant les aspects qui doivent être investigués davantage et les stratégies de réduction des risques. Cette information fournira aux chercheurs et aux comités d'éthique de la recherche les critères nécessaires à la rédaction de formulaires de consentement et ...
Neuroimaging has provided insight into numerous neurological disorders in children, such as epilepsy and cerebral palsy. Many clinicians and investigators believe that neuroimaging holds great promise, especially in the areas of behavioral and cognitive disorders. However, concerns about the risks of various neuroimaging modalities and the potential for misinterpretation of imaging results are mounting. Imaging evaluations also raise questions about stigmatization, allocation of resources, and confidentiality. Children are particularly vulnerable in this milieu and require special attention with regards to safety guidelines and modality adaptations. This article examines pediatric neuroimaging practice through an ethics lens. Most authors in the field of neuroethics focus on the future concerns of neuroimaging. In contrast, our paper examines ethical matters surrounding current clinical applications in the pediatric population. We first provide a brief overview of the neuroimaging technologies most commonly used in a pediatric clinical context and then discuss a variety of ethical issues arising from the use of these technologies. Neuroimaging Technology Overview Structural Neuroimaging Presently, structural, anatomic neuroimaging is the most commonly employed modality in the clinic. 1 Through localizing anatomical abnormalities, structural neuroimaging studies have demonstrated disorder-specific findings in children with a wide range of developmental impairments prenatally and postnatally. In clinical practice, structural neuroimaging is indicated in children with a wide variety of congenital, metabolic, neoplastic, inflammatory, and traumatic conditions. Computed tomography (CT) and magnetic resonance imaging (MRI) are two of the major imaging modalities in this category. Blood, gray matter, white matter, and spinal fluid are distinguished by differences in attenuation of an X-ray beam (in CT) or by differences in their response to radiofrequency pulses (in MRI). 2 The strengths of CT are its low cost, examination speed, ready accessibility, and easy use. 3 New CT scanners produce high-resolution images in a matter of minutes, allowing patients to undergo the procedure without the need for sedation. However, radiation exposure may be a significant concern, especially with repeated examinations.
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