Genes, cells, and biobanks: Yes, there's still a consent problem.
Ontology highlight
ABSTRACT:
SUBMITTER: Caulfield T
PROVIDER: S-EPMC5526496 | biostudies-other | 2017 Jul
REPOSITORIES: biostudies-other
Similar Datasets
Project description:A growing proportion of prospective research participants in the United States speak limited or no English. We conducted cognitive interviews with native Spanish speakers to test Spanish-language translations of simplified and traditional biobank consent forms. Comprehension was generally high and did not differ by form. Most of those who received the simplified form felt it contained the right amount of information, compared with fewer than half of those who received the traditional form. Qualitative results allowed us to identify overarching issues related to tone, formality, and voice that may affect prospective participants' trust and willingness to participate. Certain characteristics of written Spanish are seemingly at odds with recommended actions to simplify consent forms; thus, even when significant empirical effort has been expended to develop simplified consent materials in English, additional work is needed to ensure the accuracy, comprehensibility, and cultural-congruence of Spanish-language translations.
| S-EPMC6856797 | biostudies-literature
Project description:Chronic myeloid leukemia (CML) is a clonal myeloproliferative disorder of hematopoietic stem cells. At the molecular level, the disorder results from t(9;22)(q34;q11) reciprocal translocation between chromosomes, which leads to the formation of an oncogenic BCR-ABL gene fusion. Instead of progress in the understanding of the molecular etiology of CML and the development of novel therapeutic strategies, clinicians still face many challenges in the effective treatment of patients. In this review, we discuss the pathways of diagnosis and treatment of patients, as well as the problems appearing in the course of disease development. We also briefly refer to several aspects regarding the current knowledge on the molecular basis of CML and new potential therapeutic targets.
| S-EPMC6415732 | biostudies-literature
Project description:BackgroundPostoperative nausea and vomiting (PONV) is an unpleasant complication after surgery that commonly co-occurs with pain. Considering the high prevalence among pediatric patients, it is important to explore the main risk factors leading to PONV in order to optimize treatment strategies. The objectives of this study are as follows: (1) to determine the prevalence of PONV on the day of surgery by conducting interviews with pediatric patients, (2) to assess PONV prevalence in the recovery room and on the ward by analyzing nursing records, and (3) to collect information on PONV risk factors on the day of surgery and the following postoperative days. We wanted to investigate real-life scenarios rather than relying on artificially designed studies.MethodsA prospective analysis [according to STrengthening the Reporting of OBservational studies in Epidemiology (STROBE) guidelines] of PONV on the day of surgery and the following postoperative days was conducted by evaluating demographic and procedural parameters, as well as conducting interviews with the children under study. A total of 626 children and adolescents, ranging in age from 4 to 18 years, were interviewed on the ward following their surgery. The interviews were conducted using a questionnaire, as children aged 4 and above can participate in an outcome-based survey.ResultsOn the day of surgery, several multivariable independent predictors were identified for PONV. The type of surgery was found to be a significant factor (p = 0.040) with the highest odds ratio (OR) in patients with procedural investigations [OR 5.9, 95% confidence interval (CI): 1.8-19.2], followed by abdominal surgery (OR 3.1, 95% CI: 0.9-11.1) when inguinal surgery was used as the reference category. In addition, the study identified several predictors, including the amount of fentanyl administered during anesthesia (µg/kg body weight) (OR 1.4, 95% CI: 1.1-1.8), intraoperative use of piritramide (OR 2.6, 95% CI: 1.5-4.4) and diclofenac (OR 2.0, 95% CI: 1. 3-3.1), opioid administration in the recovery room (OR 3.0, 95% CI: 1.9-4.7), and piritramide use on the ward (OR 4.5, 95% CI: 1.7-11.6).ConclusionsThe main risk factors for PONV include the intraoperative administration of opioids during the recovery room stay and at the ward, the intraoperative use of non-opioids (diclofenac), and the specific type of surgical procedure. Real-life data demonstrated that in clinical praxis, there is a gap between the adherence to established guidelines and the use of antiemetic prophylaxis in surgeries that are generally not associated with a high PONV prevalence. Further efforts are needed to improve the existing procedures and thus improve the overall outcome.
| S-EPMC10642485 | biostudies-literature
Project description:Good biobank governance implies-at a minimum-transparency and accountability and the implementation of oversight mechanisms. While the biobanking community is in general committed to such principles, little is known about precisely which governance strategies biobanks adopt to meet those objectives. We conducted an exploratory analysis of governance mechanisms adopted by research biobanks, including genetic biobanks, located in Europe and Canada. We reviewed information available on the websites of 69 biobanks, and directly contacted them for additional information. Our study identified six types of commonly adopted governance strategies: communication, compliance, expert advice, external review, internal procedures, and partnerships. Each strategy is implemented through different mechanisms including, independent ethics assessment, informed consent processes, quality management, data access control, legal compliance, standard operating procedures and external certification. Such mechanisms rely on a wide range of bodies, committees and actors from both within and outside the biobanks themselves. We found that most biobanks aim to be transparent about their governance mechanisms, but could do more to provide more complete and detailed information about them. In particular, the retrievable information, while showing efforts to ensure biobanks operate in a legitimate way, does not specify in sufficient detail how governance mechanisms support accountability, nor how they ensure oversight of research operations. This state of affairs can potentially undermine biobanks' trustworthiness to stakeholders and the public in a long-term perspective. Given the ever-increasing reliance of biomedical research on large biological repositories and their associated databases, we recommend that biobanks increase their efforts to future-proof their governance.
| S-EPMC7468350 | biostudies-literature
Project description:Background. Biobanks are an important research resource that provides researchers with biological samples, tools and data, but have also been associated with a range of ethical, legal and policy issues and concerns. Although there have been studies examining the views of different stakeholders, such as donors, researchers and the general public, the media portrayal of biobanks has been absent from this body of research. This study therefore examines how biobanking has been represented in major print newspapers from Australia, Canada, the United Kingdom and the United States to identify the issues and concerns surrounding biobanks that have featured most prominently in the print media discourse. Methods. Using Factiva, articles published in major broadsheet newspapers in Canada, the US, the UK, and Australia were identified using specified search terms. The final sample size consisted of 163 articles. Results. Majority of articles mentioned or discussed the benefits of biobanking, with medical research being the most prevalent benefit mentioned. Fewer articles discussed risks associated with biobanking. Researchers were the group of people most quoted in the articles, followed by biobank employees. Biobanking was portrayed as mostly neutral or positive, with few articles portraying biobanking in a negative manner. Conclusion. Reporting on biobanks in the print media heavily favours discussions of related benefits over risks. Members of the scientific research community appear to be a primary source of this positive tone. Under-reporting of risks and a downtrend in reporting on legal and regulatory issues suggests that the print media views such matters as less newsworthy than perceived benefits of biobanking.
| S-EPMC4121587 | biostudies-literature
Project description:Defining appropriate student learning outcomes for general education science courses is a daunting task. We must ask ourselves how to best prepare our students to understand the role of science in their lives and in society at large. In the era of social media and armchair experts, life-changing scientific advancements such as vaccination are being dismissed or actively resisted, emphasizing the critical need to teach science literacy skills. One active classroom method known as problem-based learning promotes self-motivated learning and synthesis skills that, when applied in a science-literacy context, can provide students with the ability to generate informed opinions on new scientific advances throughout their lifetime. This piece describes one such problem-based course, designed to tackle the scientific basis (or lack thereof) of the 5-second rule for eating food dropped on the floor. In this course, first year students experimentally engage this issue, while also applying their developing skill set to sort out scientific controversies such as vaccine safety and genetically modified foods.
| S-EPMC6203156 | biostudies-literature
Project description:BACKGROUND: MicroRNAs (miRNAs) have emerged as important gene regulators and are recognized as key players in tumorigenesis. miR-145 is reported to be down-regulated in several cancers, but knowledge of its targets in colon cancer remains limited. METHODOLOGY/PRINCIPAL FINDINGS: To investigate the role of miR-145 in colon cancer, we have employed a microarray based approach to identify miR-145 targets. Based on seed site enrichment analyses and unbiased word analyses, we found a significant enrichment of miRNA binding sites in the 3'-untranslated regions (UTRs) of transcripts down-regulated upon miRNA overexpression. Gene Ontology analysis showed an overrepresentation of genes involved in cell death, cellular growth and proliferation, cell cycle, gene expression and cancer. A number of the identified miRNA targets have previously been implicated in cancer, including YES, FSCN1, ADAM17, BIRC2, VANGL1 as well as the transcription factor STAT1. Both YES and STAT1 were verified as direct miR-145 targets. CONCLUSIONS/SIGNIFICANCE: The study identifies and validates new cancer-relevant direct targets of miR-145 in colon cancer cells and hereby adds important mechanistic understanding of the tumor-suppressive functions of miR-145.
| S-EPMC2809101 | biostudies-literature
Project description:Magnesium alloy (Mg alloy) has attracted massive attention in the potential applications of cardiovascular stents because of its good biocompatibility and degradability. However, whether and how the Mg alloy induces inflammation in endothelial cells remains unclear. In the present work, we investigated the activation of Yes-associated protein (YAP) upon Mg alloy stimuli and unveiled the transcriptional function in Mg alloy-induced inflammation. Quantitative RT-PCR, western blotting and immunofluorescence staining showed that Mg alloy inhibited the Hippo pathway to facilitate nuclear shuttling and activation of YAP in human coronary artery endothelial cells (HCAECs). Chromatin immunoprecipitation followed sequencing was carried out to explore the transcriptional function of YAP in Mg alloy-derived inflammation. This led to the observation that nuclear YAP further bonded to the promoter region of inflammation transcription factors and co-transcription factors. This binding event activated their transcription and modified mRNA methylation of inflammation-related genes through regulating the expression of N6-methyladenosine modulators (METTL3, METTL14, FTO and WTAP). This then promoted inflammation-related gene expression and aggravated inflammation in HCAECs. In YAP deficiency cells, Mg alloy-induced inflammation was reduced. Collectively, our data suggest that YAP contributes to the Mg alloy-derived inflammation in HCAECs and may provide a potential therapeutic target that alleviates inflammation after Mg alloy stent implantation.
| S-EPMC9039498 | biostudies-literature
Project description:My father was diagnosed with stomach cancer recently. Luckily, it was still at an early stage, and endoscopic surgery successfully took care of it. My father was fortunate; since people with stomach cancer do not show clear symptoms in the early stages, the disease is often not diagnosed until it becomes advanced. In his case, the diagnosis started from a suggestion by his doctor to check whether he had a gastric infection with Helicobacter pylori, a bacterial species found in the digestive tract. In Japan, where he lives, a majority of gastric cancer patients (more than 99%) have been infected with H. pylori [1], and the causative role of this bacterial species in promoting gastric cancer is very well established. Now, scientific understanding connecting gastric cancer to H. pylori is saving the lives of many people, including my father. Thinking about this recent personal experience, I wonder if the connection between bacteria and cancer might have been considered a crazy idea decades ago. Research makes it possible to connect seemingly unrelated matters. My laboratory works on seemingly unrelated research topics, such as fungal infections and autoimmunity. However, my question is the same whatever the topic: How do leukocytes elicit and regulate inflammation when they detect infections or endogenous signals? In fact, host receptors detecting pathogens can induce autoimmunity, and autoimmunity alters host sensitivity to pathogens due to the imbalance in the immune system. We are beginning to gain some insight into this question, as revealed by some of our recent studies. For example, the NLR family, pyrin domain containing 3 (NLRP3) inflammasome, which is known to sense a wide variety of pathogens, can also change the course of experimental autoimmune encephalomyelitis (EAE), an animal model of multiple sclerosis (MS). In particular, our study suggested that disease treatment approaches need to be changed based on the activation status of the NLRP3 inflammasome [2]. Another recent study from our laboratory demonstrated that a protein, termed osteopontin (OPN), skews the balance of population sizes between myeloid cells (i.e., innate immunity) and lymphoid cells (i.e., adaptive immunity) during infections and other biological insults [3]. An intracellular isoform of OPN (iOPN) negatively regulates emergency myelopoiesis. Thus, OPN attenuates host resistance by limiting neutrophil supply at the early stage of systemic Candida infection. In contrast, a secreted OPN (sOPN) isoform positively regulates the expansion of T lymphocytes and ends up triggering autoimmune colitis. I am an immunologist but obtained my PhD in mycology. Nevertheless, it took some time for me to appreciate that research enables us to connect the dots placed far apart. This is a truly exciting time to connect seemingly unrelated biological phenomena, because scientists are exponentially increasing our understanding of nature. This is particularly true in innate immunity, which is not only the central alarming system in host-microbe interactions but also relates to almost any human disease we can imagine. However, we are facing a dark age for science and research, in which certain interests wrongfully discredit some research fields. There are things that can be achieved only by research. I am always ready to tell anyone, "Yes, research matters!".
| S-EPMC5552019 | biostudies-other
Project description:The development of biomedical science requires the creation of biological material collections that allow for the search and discovery of biomarkers for pathological conditions, the identification of new therapeutic targets, and the validation of these findings in samples from patients and healthy people. Over the past decades, the importance and need for biobanks have increased considerably. Large national and international biorepositories have replaced small collections of biological samples. The aim of this work is to provide a basic understanding of biobanks and an overview of how biobanks have become essential structures in modern biomedical research.
| S-EPMC7400532 | biostudies-literature