Minors and incompetent adults: A tale of two populations

Author(s):  
Vasiliki Rahimzadeh ◽  
Karine Sénécal ◽  
Erika Kleiderman ◽  
Bartha M. Knoppers

The participation of vulnerable populations in biomedical research—such as minors and incompetent adults—has in the past, and will continue to be a central consideration in bioethics considering they warrant special protections against potential rights violations and exposure to undue risk. These populations, however, should not be excluded from the opportunity to benefit from scientific progress through their research participation. The promises of personalized medicine for improved diagnosis and treatment of pediatric diseases further underscores this pressing need for their inclusion. This chapter provides both a retrospective and prospective analysis of research participation, with a special focus on the involvement of minors and incompetent adults in the data-intensive research typical of personalized medicine and genomic translation. The authors propose reverse vulnerability as one conceptual lens through which to examine the ethical intersectionalities associated with data-intensive research participation within both populations. The chapter includes a discussion of how situational vulnerabilities unfold for minors and incompetent adults while participating in data-intensive research, as well as how these vulnerabilities are implicated in future ethics governance in the post genomic era.

2013 ◽  
Vol 7 (supplement) ◽  
pp. 59-71 ◽  
Author(s):  
Stephen Griffin

This paper will explore potential roles for libraries in support of data-intensive research and inquiry. Scholars and researchers from many disciplines are using vast amounts of data to advance our understanding of both the physical nature of our world and its place in the universe, as well as to gain new insights into the behaviours of societies and individuals. Humanists are rapidly integrating newly digitised corpora, digital representations of material culture and spatial and temporal indexed data into their scholarly endeavours. Libraries have undergone significant transformation over the past several decades in confronting the “digital deluge” and integrating digital content into their holdings. However assuming additional responsibilities for managing and making large and complex data sets available and providing new tools for users presents significant challenges given limited resources. This paper examines data-intensive scholarship and suggest viable roles for libraries.


2021 ◽  
pp. 105971232098304
Author(s):  
R Alexander Bentley ◽  
Joshua Borycz ◽  
Simon Carrignon ◽  
Damian J Ruck ◽  
Michael J O’Brien

The explosion of online knowledge has made knowledge, paradoxically, difficult to find. A web or journal search might retrieve thousands of articles, ranked in a manner that is biased by, for example, popularity or eigenvalue centrality rather than by informed relevance to the complex query. With hundreds of thousands of articles published each year, the dense, tangled thicket of knowledge grows even more entwined. Although natural language processing and new methods of generating knowledge graphs can extract increasingly high-level interpretations from research articles, the results are inevitably biased toward recent, popular, and/or prestigious sources. This is a result of the inherent nature of human social-learning processes. To preserve and even rediscover lost scientific ideas, we employ the theory that scientific progress is punctuated by means of inspired, revolutionary ideas at the origin of new paradigms. Using a brief case example, we suggest how phylogenetic inference might be used to rediscover potentially useful lost discoveries, as a way in which machines could help drive revolutionary science.


2021 ◽  
Vol 18 ◽  
pp. 147997312199478
Author(s):  
Daniel Langer

The rehabilitation needs of individuals undergoing thoracic surgery are changing, especially as surgical management is increasingly being offered to patients who are at risk of developing functional limitations during and after hospital discharge. In the past rehabilitative management of these patients was frequently limited to specific respiratory physiotherapy interventions in the immediate postoperative setting with the aim to prevent postoperative pulmonary complications. In the past two decades, this focus has shifted toward pulmonary rehabilitation interventions that aim to improve functional status of individuals, both in the pre- and (longer-term) postoperative period. While there is increased interest in (p)rehabilitation interventions the majority of thoracic surgery patients are however currently on their own with respect to progression of their exercise and physical activity regimens after they have been discharged from hospital. There are also no formal guidelines supporting the referral of these patients to outpatient rehabilitation programs. The current evidence regarding rehabilitation interventions initiated before, during, and after the hospitalization period will be briefly reviewed with special focus on patients undergoing surgery for lung cancer treatment and patients undergoing lung transplantation. More research will be necessary in the coming years to modify or change clinical rehabilitation practice beyond the acute admission phase in patients undergoing thoracic surgery. Tele rehabilitation or web-based activity counseling programs might also be interesting emerging alternatives in the (long-term) postoperative rehabilitative treatment of these patients.


Author(s):  
Shawn T. Brown ◽  
Paola Buitrago ◽  
Edward Hanna ◽  
Sergiu Sanielevici ◽  
Robin Scibek ◽  
...  

Think ◽  
2021 ◽  
Vol 21 (60) ◽  
pp. 5-20
Author(s):  
Anna Marmodoro

The debate over whether and how philosophers of today may usefully engage with philosophers of the past is nearly as old as the history of philosophy itself. Does the study of the history of philosophy train or corrupt the budding philosopher's mind? Why study the history of philosophy? And, how to study the history of philosophy? I discuss some mainstream approaches to the study of the history of philosophy (with special focus on ancient philosophy), before explicating the one I adopt and commend.


2015 ◽  
Vol 32 (3) ◽  
pp. 153-163
Author(s):  
Md Mizanur Rahman

Current and emerging biomedical science efforts are driven by determining how to improve clini-cal outcomes for patients. High-throughput tech-nology has revolutionized the area of transla-tional research, confirming the high complexity and heterogeneity of common diseases, partic-ularly cancer. Therefore, moving from ‘classic’ single-gene-based molecular investigation to molecular network research might result in dis-covering clinical implications faster and more efficiently .Molecular characterization of tumour cells enables refinement of classifications for many cancers and can sometimes guide treatment. Malignant diseases are no longer classified only by tumour site and histology but are separated into various homogenous molecular subtypes, distinguished by a presumed key molecular alteration. Therapies for patients with cancer have changed gradually over the past decade, moving away from the administration of broadly acting cytotoxic drugs towards the use of more-specific therapies that are targeted to each tumour. To facilitate this shift, tests need to be developed to identify those individuals who require therapy and those who are most likely to benefit from certain therapies. In particular, tests that predict the clinical outcome for patients on the basis of the genes expressed by their tumours are likely to increasingly affect patient management, heralding a new era of personalized medicine. In this review a brief discussion on definition and molecular aspects of personalized medicine and its practical application for the management of common solid cancers are highlighted.J Bangladesh Coll Phys Surg 2014; 32: 153-163


1987 ◽  
Vol 53 (4) ◽  
pp. 295-299 ◽  
Author(s):  
Marleen Pugach ◽  
Mara Sapon-Shevin

The calls for educational reform that have dominated the professional and lay literature for the past few years have been decidedly silent in discussing the role of special education either as a contributor or a solution to the problems being raised. As an introduction to this “Special Focus” on the relationship between general educational reform and special education, this article summarizes some of the more prominent reports with regard to their treatment (and nontreatment) of special education. The impact of proposed reforms for the conceptualization and operation of special education is the subject of the five articles that follow.


2014 ◽  
Vol 22 (2) ◽  
pp. 173-185 ◽  
Author(s):  
Eli Dart ◽  
Lauren Rotman ◽  
Brian Tierney ◽  
Mary Hester ◽  
Jason Zurawski

The ever-increasing scale of scientific data has become a significant challenge for researchers that rely on networks to interact with remote computing systems and transfer results to collaborators worldwide. Despite the availability of high-capacity connections, scientists struggle with inadequate cyberinfrastructure that cripples data transfer performance, and impedes scientific progress. The ScienceDMZparadigm comprises a proven set of network design patterns that collectively address these problems for scientists. We explain the Science DMZ model, including network architecture, system configuration, cybersecurity, and performance tools, that creates an optimized network environment for science. We describe use cases from universities, supercomputing centers and research laboratories, highlighting the effectiveness of the Science DMZ model in diverse operational settings. In all, the Science DMZ model is a solid platform that supports any science workflow, and flexibly accommodates emerging network technologies. As a result, the Science DMZ vastly improves collaboration, accelerating scientific discovery.


2020 ◽  
Vol 477 (15) ◽  
pp. 2893-2919
Author(s):  
Walaa E. Kattan ◽  
John F. Hancock

The three human RAS proteins are mutated and constitutively activated in ∼20% of cancers leading to cell growth and proliferation. For the past three decades, many attempts have been made to inhibit these proteins with little success. Recently; however, multiple methods have emerged to inhibit KRAS, the most prevalently mutated isoform. These methods and the underlying biology will be discussed in this review with a special focus on KRAS-plasma membrane interactions.


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