scholarly journals Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Tania Ascencio-Carbajal ◽  
Garbiñe Saruwatari-Zavala ◽  
Fernando Navarro-Garcia ◽  
Eugenio Frixione
Keyword(s):  
International Organizations ◽  
Personal Information ◽  
Genomic Medicine ◽  
Genomic Research ◽  
Social Implications ◽  
Genomic Testing ◽  
National Regulation ◽  
Starting Point ◽  
The Social ◽  
Minimum Criteria

Abstract Background Genetic/genomic testing (GGT) are useful tools for improving health and preventing diseases. Still, since GGT deals with sensitive personal information that could significantly impact a patient’s life or that of their family, it becomes imperative to consider Ethical, Legal and Social Implications (ELSI). Thus, ELSI studies aim to identify and address concerns raised by genomic research that could affect individuals, their family, and society. However, there are quantitative and qualitative discrepancies in the literature to describe the elements that provide content to the ELSI studies and such problems may result in patient misinformation and harmful choices. Methods We analyzed the major international documents published by international organizations to specify the parameters that define ELSI and the recognized criteria for GGT, which may prove useful for researchers, health professionals and policymakers. First, we defined the parameters of the ethical, legal and social fields in GGT to avoid ambiguities when using the acronym ELSI. Then, we selected nine documents from 44 relevant publications by international organizations related to genomic medicine. Results We identified 29 ELSI sub-criteria concerning to GGT, which were organized and grouped within 10 minimum criteria: two from the ethical field, four from the legal field and four from the social field. An additional analysis of the number of appearances of these 29 sub-criteria in the analyzed documents allowed us to order them and to determine 7 priority criteria for starting to evaluate and propose national regulations for GGT. Conclusions We propose that the ELSI criteria identified herein could serve as a starting point to formulate national regulation on personalized genomic medicine, ensuring consistency with international bioethical requirements.

scholarly journals Genetic/Genomic Testing: Defining The Parameters For Ethical, Legal and Social Implications (ELSI)

2021 ◽  
Author(s):  
Tania Ascencio-Carbajal ◽  
Garbiñe Saruwatari-Zavala ◽  
Fernando Navarro-Garcia ◽  
Eugenio Frixione
Keyword(s):  
Personal Information ◽  
Genomic Medicine ◽  
Genomic Research ◽  
Social Implications ◽  
Genomic Testing ◽  
Life Choices ◽  
National Regulation ◽  
Starting Point ◽  
The Social ◽  
Minimum Criteria

Abstract Background Genetic/genomic testing (GGT) are useful tools for improving health and preventing diseases. Still, since GGT deals with sensitive personal information that could significantly impact a patient life or family, it becomes imperative to consider Ethical, Legal and Social Implications (ELSI). Thus, ELSI studies aim to identify and address concerns raised by genomic research that could affect individuals, their family, and society. However, there are quantitative and qualitative discrepancies in the literature to describe the elements that provide content to the ELSI studies and such problems may result in patient misinformation and making wrong life choices. Methods Here, we analyzed the major international bioethics literature to specify the parameters that define ELSI and the recognized criteria for GGT, which may prove useful for researchers, health professionals and policymakers. First, we defined the parameters of the ethical, legal and social fields in GGT to avoid ambiguities when using the acronym ELSI. Then, we selected nine documents from 44 relevant publications by international organizations related to genomic medicine. Results A thorough analysis of these documents allowed us to group and extract criteria by thematic affinity. We identified 29 ELSI sub-criteria concerning to GGT, which were organized and grouped within 10 minimum criteria: two from the ethical field, four from the legal field and four from the social field. An additional analysis of the number of appearances of these 29 sub-criteria in the analyzed documents allow us to order them and to determine 7 priority criteria for starting to evaluate and propose national regulations for GGT. Conclusions We propose that the ELSI criteria identified herein could serve as a starting point to formulate national regulation on personalized genomic medicine, ensuring consistency with international bioethical requirements.

Civilization and its nerds: Anti-intellectualism in The Big Bang Theory

2020 ◽  
Vol 39 (2) ◽  
pp. 183-197 ◽  
Author(s):  
Janelle Pötzsch
Keyword(s):  
Big Bang ◽  
Point Of View ◽  
Social Implications ◽  
Verbal Behaviour ◽  
Starting Point ◽  
The Social ◽  
Big Bang Theory ◽  
The Big Bang ◽  
Tv Show ◽  
Shed Light

This article analyses whether and to what extent the popular TV show The Big Bang Theory conveys anti-intellectual ideas. The starting point of my enquiry is the verbal behaviour of the ‘main nerd’ of this series, Sheldon Cooper, who is noteworthy for his lack of empathy and propriety. I aim to shed light on the kind of inappropriate verbal behaviour Sheldon displays by analysing a speech pattern this character is particularly bad at ‐ ‘white lies’, that is lies made out of consideration for other people’s feelings. By drawing on Immanuel Kant’s thoughts on civility in his Anthropology from a Pragmatic Point of View (1798), I will detail the social implications of white lies and how Sheldon fails in employing them. Doing so will be helpful in establishing why Sheldon’s comments and behaviour appear as outlandish as they do. This in turn provides important insights into the way the televisual text of The Big Bang Theory relates with its audience and the social implications of this connection. I will conclude with the observation that the portrayal of Sheldon Cooper relies heavily on two kinds of stereotypes: anti-intellectual ones and those associated with the ‘nerd’ identity.

Ethical, social and legal implications of genomics for primary care

2020 ◽  
pp. 175573802097440
Author(s):  
John Spicer ◽  
Andrew Papanikitas
Keyword(s):  
Primary Care ◽  
Family History ◽  
Genomic Medicine ◽  
Scientific Progress ◽  
Genomic Research ◽  
Learning Needs ◽  
Public Media ◽  
Legal Implications ◽  
The Social ◽  
Technical Advances

The technical advances of genomic medicine have been well described in recent years, in the medical as well as public media. The social aspects of these advances have significant implications for primary care. GPs have previously ‘done genomics’ simply by the act of taking a family history from a patient and interpreting that history as part of ordinary care. Even at the level of a family history, genomic practice inevitably involves people other than that patient, and from that fact all the social and moral complexities arise. The scientific progress in current genomic research is creating a sphere of knowledge and information that GPs will need to be increasingly familiar with now and in the future. These advances offer opportunities and challenges for the health of communities and the learning needs of all GPs [see Box 1].

The social implications of technology

1973 ◽  
Vol 52 (3) ◽  
pp. 93
Author(s):  
J.D. Radford ◽  
D.B. Richardson
Keyword(s):  
Social Implications ◽  
The Social

Liszt at the Piano: The Impact of Iconography on mid-Nineteenth Century Musicology

2014 ◽  
Vol 55 (1-2) ◽  
pp. 131-144
Author(s):  
Suzanne Marie Francis
Keyword(s):  
Nineteenth Century ◽  
Music History ◽  
Collective Identities ◽  
Cultural Contexts ◽  
Maximum Benefit ◽  
Starting Point ◽  
The Social ◽  
Iconic Status ◽  
The Impact

By the time of his death in 1827, the image of Beethoven as we recognise him today was firmly fixed in the minds of his contemporaries, and the career of Liszt was beginning to flower into that of the virtuosic performer he would be recognised as by the end of the 1830s. By analysing the seminal artwork Liszt at the Piano of 1840 by Josef Danhauser, we can see how a seemingly unremarkable head-and-shoulders bust of Beethoven in fact holds the key to unlocking the layers of commentary on both Liszt and Beethoven beneath the surface of the image. Taking the analysis by Alessandra Comini as a starting point, this paper will look deeper into the subtle connections discernible between the protagonists of the picture. These reveal how the collective identities of the artist and his painted assembly contribute directly to Beethoven’s already iconic status within music history around 1840 and reflect the reception of Liszt at this time. Set against the background of Romanticism predominant in the social and cultural contexts of the mid 1800s, it becomes apparent that it is no longer enough to look at a picture of a composer or performer in isolation to understand its impact on the construction of an overall identity. Each image must be viewed in relation to those that preceded and came after it to gain the maximum benefit from what it can tell us.

Em busca de explicações sobre Vocábulos Africanos: Uma investigação em alguns dicionários e/ou glossários brasileiros (1889-2006)

2020 ◽  
Author(s):  
César Costa Vitorino
Keyword(s):  
Brazilian Portuguese ◽  
Singular Value ◽  
Academic Life ◽  
African Languages ◽  
Starting Point ◽  
The Social ◽  
New Look ◽  
Afro Brazilian

The book “In search of explanations about African words: an investigation in some Brazilian dictionaries and / or glossaries (1889-2006)” raises controversial and relevant questions about the usefulness of Africanism for Brazil and the delimitation between Afro-Brazilian and africanists studies. The work is one of the results of the work that the author has been developing throughout his long and rich academic life. The author shows enthusiasm for the study of Brazilian Africanism, especially in what concerns on the relationships that are established between words and culture.It shows the participation of African languages in the constitution of the Brazilian Portuguese lexicon, since it considers that studies in this area have been taking place very slowly. Therefore, this work intends to promote the production of future researches that discuss about the social place of African words in Brazilian Portuguese. It makes a point of which we should have no doubt in affirming - unequivocally and systematically - that one can speak of Brazilian Africanism. It takes as a starting point the analysis of dictionaries and glossaries (1889-2006), while taking a retrospective look.It reflects, with such observation, about what is classified as Africanism in the Brazilian Portuguese lexicon. It suggests the need to draw a line between Afro-Brazilian and Africanists studies. Finally, it is expected that such a work can bring new look and perspectives. It is even verified that, in his text, there is a lot of work for everyone. That´s why this work in this book is considered by the author as a singular value.

Funerary Ritual

2019 ◽  
pp. 292-309
Author(s):  
Mireia López-Bertran
Keyword(s):  
Point Of View ◽  
Good Death ◽  
Social Implications ◽  
Archaeological Remains ◽  
Deceased Person ◽  
Funerary Rituals ◽  
The Social ◽  
The Common ◽  
Funerary Rites ◽  
Written Sources

This chapter explores the funerary rites in the Phoenician-Punic world from a comprehensive point of view, and it focuses on the common points arising from a large amount of data. The concern for burying their deceased and the belief in the soul’s afterlife show that the Phoenicians considered death as a transformation rather than as the end of a person’s life. Through our access to archaeological remains and written sources, we can reconstruct the existence of a meaningful burial program that was destined to provide a “good death” and afterlife. Funerary rituals, thus, are the actions or gestures to achieve this goal. The aim of this chapter is to explain the rites that family members undertook once someone died, in order to transform correctly the deceased person into an otherworldly being, the ancestor. The social implications of the data arising from burials are also briefly considered.

scholarly journals ‘CTRL’: an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research

2021 ◽  
Author(s):  
Matilda A. Haas ◽  
Harriet Teare ◽  
Megan Prictor ◽  
Gabi Ceregra ◽  
Miranda E. Vidgen ◽  
...  
Keyword(s):  
Large Scale ◽  
Genomic Medicine ◽  
International Standards ◽  
Security And Privacy ◽  
Genomic Research ◽  
Return Of Results ◽  
Future Research ◽  
Design And Development ◽  
Participant Engagement ◽  
Dynamic Consent

AbstractThe complexities of the informed consent process for participating in research in genomic medicine are well-documented. Inspired by the potential for Dynamic Consent to increase participant choice and autonomy in decision-making, as well as the opportunities for ongoing participant engagement it affords, we wanted to trial Dynamic Consent and to do so developed our own web-based application (web app) called CTRL (control). This paper documents the design and development of CTRL, for use in the Australian Genomics study: a health services research project building evidence to inform the integration of genomic medicine into mainstream healthcare. Australian Genomics brought together a multi-disciplinary team to develop CTRL. The design and development process considered user experience; security and privacy; the application of international standards in data sharing; IT, operational and ethical issues. The CTRL tool is now being offered to participants in the study, who can use CTRL to keep personal and contact details up to date; make consent choices (including indicate preferences for return of results and future research use of biological samples, genomic and health data); follow their progress through the study; complete surveys, contact the researchers and access study news and information. While there are remaining challenges to implementing Dynamic Consent in genomic research, this study demonstrates the feasibility of building such a tool, and its ongoing use will provide evidence about the value of Dynamic Consent in large-scale genomic research programs.

scholarly journals Bacterial and Viral Coinfections with the Human Respiratory Syncytial Virus

2021 ◽  
Vol 9 (6) ◽  
pp. 1293
Author(s):  
Gaspar A. Pacheco ◽  
Nicolás M. S. Gálvez ◽  
Jorge A. Soto ◽  
Catalina A. Andrade ◽  
Alexis M. Kalergis
Keyword(s):  
Respiratory Syncytial Virus ◽  
Influenza A ◽  
Human Respiratory Syncytial Virus ◽  
Respiratory Pathogens ◽  
Parainfluenza Viruses ◽  
Starting Point ◽  
The Social ◽  
Syncytial Virus ◽  
Tract Infections ◽  
Polymicrobial Infections

The human respiratory syncytial virus (hRSV) is one of the leading causes of acute lower respiratory tract infections in children under five years old. Notably, hRSV infections can give way to pneumonia and predispose to other respiratory complications later in life, such as asthma. Even though the social and economic burden associated with hRSV infections is tremendous, there are no approved vaccines to date to prevent the disease caused by this pathogen. Recently, coinfections and superinfections have turned into an active field of study, and interactions between many viral and bacterial pathogens have been studied. hRSV is not an exception since polymicrobial infections involving this virus are common, especially when illness has evolved into pneumonia. Here, we review the epidemiology and recent findings regarding the main polymicrobial infections involving hRSV and several prevalent bacterial and viral respiratory pathogens, such as Staphylococcus aureus, Pseudomonas aeruginosa, Streptococcus pneumoniae, Haemophilus influenzae, Moraxella catarrhalis, Klebsiella pneumoniae, human rhinoviruses, influenza A virus, human metapneumovirus, and human parainfluenza viruses. As reports of most polymicrobial infections involving hRSV lack a molecular basis explaining the interaction between hRSV and these pathogens, we believe this review article can serve as a starting point to interesting and very much needed research in this area.

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