scholarly journals Genomics Education in the Era of Personal Genomics: Academic, Professional, and Public Considerations

2020 ◽  
Vol 21 (3) ◽  
pp. 768 ◽  
Author(s):  
Kiara V. Whitley ◽  
Josie A. Tueller ◽  
K. Scott Weber
Keyword(s):  
Ethical Issues ◽  
Modern Science ◽  
Genome Project ◽  
Genomic Sequencing ◽  
Personal Genomics ◽  
Genomic Information ◽  
Personal Genomic ◽  
The Public ◽  
Biological Studies ◽  
Genomics Education

Since the completion of the Human Genome Project in 2003, genomic sequencing has become a prominent tool used by diverse disciplines in modern science. In the past 20 years, the cost of genomic sequencing has decreased exponentially, making it affordable and accessible. Bioinformatic and biological studies have produced significant scientific breakthroughs using the wealth of genomic information now available. Alongside the scientific benefit of genomics, companies offer direct-to-consumer genetic testing which provide health, trait, and ancestry information to the public. A key area that must be addressed is education about what conclusions can be made from this genomic information and integrating genomic education with foundational genetic principles already taught in academic settings. The promise of personal genomics providing disease treatment is exciting, but many challenges remain to validate genomic predictions and diagnostic correlations. Ethical and societal concerns must also be addressed regarding how personal genomic information is used. This genomics revolution provides a powerful opportunity to educate students, clinicians, and the public on scientific and ethical issues in a personal way to increase learning. In this review, we discuss the influence of personal genomics in society and focus on the importance and benefits of genomics education in the classroom, clinics, and the public and explore the potential consequences of personal genomic education.

scholarly journals Exploring Genetic Data Across Individuals Using Novel Comparative Report Tools (Preprint)

2018 ◽  
Author(s):  
Lauren Westendorf ◽  
Orit Shaer ◽  
Christina Pollalis ◽  
Clarissa Verish ◽  
Oded Nov ◽  
...  
Keyword(s):  
Family Members ◽  
Genomic Data ◽  
Genetic Data ◽  
Personal Genomics ◽  
Genomic Information ◽  
Genetic Characteristics ◽  
Personal Genomic ◽  
The Third ◽  
User Comprehension ◽  
Compare And Contrast

BACKGROUND The growth in the availability of personal genomic data to non-experts poses multiple challenges to Human-Computer Interaction (HCI) research: data are highly sensitive, complex, and have health implications for individuals and families. However, there has been little research on how non-expert users explore genomic data. Studies that investigated the information practices of personal genomic data users found that non-experts seek to contextualize and compare their personal data to others. The family-relevant nature of genetic data highlights the need for tools to enable non-experts to explore not only their own data, but to compare and contrast it with the data of others. OBJECTIVE We designed CrossGenomics, a novel tool for comparing personal genetic reports, which enables exploration of shared and unshared genetic variants among individuals. Focusing on communicating comparative impact, rarity, and certainty, we evaluated alternative novel interactive prototypes of this tool. In particular, we sought to: 1. asses to what extent are users able to comprehend both intra-individual and inter-individual information, and whether there are gaps between subjective and objective comprehension; 2. understand how people engage with a comparison tool for personal genomics, and what visualization type and features are most helpful for comprehension; 3. identify the needs of early adopters, people who share their genetic reports publicly, for comparing their genetic reports to others’. METHODS We conducted three online user studies. The first two studies employed a controlled experimental design to examine the effectiveness of different design interventions on user comprehension. In both studies, we applied between-subjects design with alternative views for comparing the personal genomic information of fictional family members. Participants were Amazon Mechanical Turk workers. Building on the two initial studies, the third user study evaluated a redesigned version of CrossGenomics 2.0, which combines multiple views. We recruited 49 participants, who are members of Open Humans and shared their genomic information publicly. Participants used the tool to compare their own personal genomic report to the report of four famous people. RESULTS Results from the first two studies highlight strengths of two visualization types and of particular features in enabling user comprehension of genomic data, and demonstrate the value of affording users the flexibility to examine the same report using multiple perspectives. Results from the third study emphasize users’ motivation and needs in comparison of genomic data. CONCLUSIONS The familial nature of personal genomic data highlights the need for tools to enable non-experts to explore not only their own data, but to compare and contrast their data with data of other biological family members, who share common genetic characteristics. The design and evaluation of CrossGenomics offer important insights into the design of future tools for personal genomics exploration and comparison.

scholarly journals COVID-19 Pandemic, Transparency, and “Polidemic” in the Republic of Korea

2021 ◽  
Vol 13 (2) ◽  
pp. 213-224
Author(s):  
Cheol Kang ◽  
Ilhak Lee
Keyword(s):  
Media Coverage ◽  
Significant Contribution ◽  
Ethical Issues ◽  
Republic Of Korea ◽  
Global Media ◽  
The Public ◽  
Rational Debate ◽  
Policy Measures ◽  
The Republic ◽  
New Perspective

AbstractThis article examines the development of the Republic of Korea’s strategy to prevent the spread of COVID-19 with particular focus on ethical issues and the problem of politicization of public communication. Using prominent examples of stakeholders who have acted and expressed themselves in highly contradictory ways on the topic of the pandemic, we provide an analysis of how the public health policy discourse has entered into the realm of politicization and elaborate on the danger that this phenomenon poses in terms of rational debate and appropriate policy measures geared toward the public’s safety. Considering the role that the Republic of Korea have had in global media coverage of quarantine policies and epidemic prevention, we believe that our study makes a significant contribution to the literature because it provides a new perspective and insights into the forces at work within and around a prevention strategy that has both been lauded and seen as highly controversial.

Test genetici e consenso informato

2012 ◽  
pp. 68-95
Author(s):  
Marco Seri ◽  
Claudio Graziano ◽  
Daniela Turchetti ◽  
Juri Monducci
Keyword(s):  
Dna Sequencing ◽  
Human Genetics ◽  
Ethical Issues ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Genome Project ◽  
Ethical Challenges ◽  
Sequencing Technologies ◽  
The Human Genome Project

The pace of discovery in the field of human genetics has increased exponentially in the last 30 years. We have witnessed the completion of the Human Genome Project, the identification of hundreds of disease-causing genes, and the dawn of genomic medicine (clinical care based on genomic information). Reduction of DNA sequencing costs, thanks to the so-called "next generation sequencing" technologies, is driving a shift towards the era of "personal genomes", but scientific as well as ethical challenges ahead are countless. We provide an overview on the classification of genetic tests, on informed consent procedures in the context of genetic counseling, and on specific ethical issues raised by the implementation of new DNA sequencing technologies.

Are We Prepared for Precision Public Health? An Examination of Genomics Content in Graduate Public Health Programs

2021 ◽  
pp. 003335492110557
Author(s):  
Karen L. Niemchick ◽  
Ally Goerge ◽  
Amy H. Ponte
Keyword(s):  
Public Health ◽  
United States ◽  
The United States ◽  
Genome Project ◽  
Public Health Workforce ◽  
Public Health Genomics ◽  
Master Of Public Health ◽  
Precision Public Health ◽  
Populations At Risk ◽  
Genomics Education

Objective With the completion of the Human Genome Project and swift development of genomic technologies, public health practitioners can use these advancements to more precisely target disease interventions to populations at risk. To integrate these innovations into better health outcomes, public health professionals need to have at least a basic understanding of genomics within various disciplines of public health. This descriptive study focused on the current level of genomics content in accredited master of public health (MPH) programs in the United States. Methods We conducted an internet search on all 171 Council on Education for Public Health (CEPH)–accredited MPH programs in the United States for genomics content in required and elective courses using the search terms “genetics,” “genomics,” and “molecular.” Results Of the 171 CEPH-accredited MPH programs examined, 52 (30.4%) schools and programs in 34 states offered some type of genomics education. Thirty-five (20.5%) schools and programs had a course in genetic epidemiology, 29 (16.9%) had a course in genetic biostatistics or bioinformatics, and 17 (9.9%) had a course in general public health genomics. The remaining 119 offered no course with a focus on genetics or genomics. In addition, some electives or specifically focused courses related to genomics were offered. Conclusion We found inadequate training in public health genomics for MPH students. To realize the promise of precision public health and to increase the understanding of genomics among the public health workforce, MPH programs need to find ways to integrate genomics education into their curricula.

scholarly journals Can the Health-Care System Meet the Challenge of Pandemic Flu? Planning, Ethical, and Workforce Considerations

2007 ◽  
Vol 122 (5) ◽  
pp. 573-578 ◽  
Author(s):  
Peter J. Levin ◽  
Eric N. Gebbie ◽  
Kristine Qureshi
Keyword(s):  
Public Health ◽  
Health Care ◽  
Ethical Issues ◽  
Care Delivery ◽  
Care Staff ◽  
Health Care Staff ◽  
Accurate Information ◽  
The Public ◽  
Health Care Delivery Systems ◽  
The Impact

The federal pandemic influenza plan predicts that 30% of the population could be infected. The impact of this pandemic would quickly overwhelm the public health and health-care delivery systems in the U.S. and throughout the world. Surge capacity for staffing, availability of drugs and supplies, and alternate means to provide care must be included in detailed plans that are tested and drilled ahead of time. Accurate information on the disease must be made available to health-care staff and the public to reduce fear. Spokespersons must provide clear, consistent messages about the disease, including actions to be taken to contain its spread and treat the afflicted. Home care will be especially important, as hospitals will be quickly overwhelmed. Staff must be prepared ahead of time to assure their ability and willingness to report to work, and public health must plan ahead to adequately confront ethical issues that will arise concerning the availability of treatment resources. The entire community must work together to meet the challenges posed by an epidemic. Identification and resolution of these challenges and issues are essential to achieve adequate public health preparedness.

Reforming the criminal justice system – an ethical leadership approach

2017 ◽  
Vol 13 (2) ◽  
pp. 64-75 ◽  
Author(s):  
Verl Anderson ◽  
Riki Ichiho
Keyword(s):  
Criminal Justice ◽  
Criminal Justice System ◽  
Ethical Leadership ◽  
Justice System ◽  
Ethical Issues ◽  
Content Type ◽  
The Public ◽  
Moral Perspective ◽  
Conceptual Paper ◽  
Practical Implications

Purpose The current criminal justice system is pledged to serve and protect society while preserving the rights of those who are accused. The purpose of this paper is to explore the premise of “innocent until proven guilty” and examine whether this assumption truly prevails under the current criminal justice system, or be modified to accommodate a sliding continuum of virtuosity. Design/methodology/approach This paper is a conceptual paper which relies heavily on the current literature about criminal justice and related ethical issues. Findings The paper argues that today’s criminal justice system fails to meet the standards of the virtuous continuum and that those who oversee that system need to rethink how the system operates and is perceived by the public if they wish the criminal justice system to be perceived as just, fair, and ethically responsible. Research limitations/implications Because this paper is a conceptual paper it does not present research hypotheses. Practical implications This paper suggests that “virtue” and “ethics” must be the foundation upon which the criminal justice system is evaluated, and criminal justice must incorporate an ethical standard which is virtuous and fair to all parties and leaders who oversee that system must meet the standards suggested by the virtuous continuum. Originality/value This paper is among the first to identify the viewpoint of the virtuous perspective, moral perspective, amoral perspective, and immoral perspective in the criminal justice system.

scholarly journals Draft Genome Sequences of 1,183 Salmonella Strains from the 100K Pathogen Genome Project

2017 ◽  
Vol 5 (28) ◽  
Author(s):  
Nguyet Kong ◽  
Matthew Davis ◽  
Narine Arabyan ◽  
Bihua C. Huang ◽  
Allison M. Weis ◽  
...  
Keyword(s):  
Human Health ◽  
Global Economy ◽  
Draft Genome ◽  
Genome Project ◽  
Genomic Diversity ◽  
Genome Sequences ◽  
Substantial Impact ◽  
The Public ◽  
Common Food ◽  
Pathogen Genome

ABSTRACT Salmonella is a common food-associated bacterium that has substantial impact on worldwide human health and the global economy. This is the public release of 1,183 Salmonella draft genome sequences as part of the 100K Pathogen Genome Project. These isolates represent global genomic diversity in the Salmonella genus.

scholarly journals The PiGeOn project: protocol of a longitudinal study examining psychosocial and ethical issues and outcomes in germline genomic sequencing for cancer

BMC Cancer ◽  
2018 ◽  
Vol 18 (1) ◽  
Author(s):  
Megan Best ◽  
Ainsley J. Newson ◽  
Bettina Meiser ◽  
Ilona Juraskova ◽  
David Goldstein ◽  
...  
Keyword(s):  
Longitudinal Study ◽  
Ethical Issues ◽  
Genomic Sequencing

scholarly journals A Fresh Apple or a New Barrel: Business Ethics from an Individual to Corporate Level

2017 ◽  
Vol 8 (1) ◽  
pp. 8
Author(s):  
Sibel Oktar Thomas
Keyword(s):  
Business Ethics ◽  
Human Nature ◽  
Boards Of Directors ◽  
Ethical Issues ◽  
Holistic Approach ◽  
Codes Of Ethics ◽  
Global Scale ◽  
Economic Effects ◽  
The Public ◽  
Purpose Of Business

The moral nature of corporations has been discussed for a long time. But, since 2001, with enormous economic effects of the misconduct of some corporations this discussion gained another dimension, it moved into the public sphere, the subject became more sensitive. The anger and mistrust of the public toward business triggered legislators and corporations to take urgent action. For example, just after the collapse of Enron (2001) the American Congress passed the Sarbanes-Oxley Act (2002) that covers the responsibilities of boards of directors and requires compliance training at all levels. It also revived the old controversial arguments about the nature of business – whether the only purpose of business is to make profits, the relationship of business and ethics – whether business ethics is an oxymoron, and human nature – whether it is ‘bad apples’ or ‘bad barrels’. Yet, with new sets of regulations, in 2017, we are still witnessing the misconduct of corporations on a global scale. This article investigates the effectiveness of corporate efforts such as revisiting mission statements, polishing the codes of ethics and conducting training, by evaluating the nature of business, human nature and the understanding of ethics in the workplace. By looking through the lens of utilitarianism of ethical issues in business, I will argue that codes of ethics and ethics training are necessary but not sufficient. Within the scope of this paper I wish to pave the way to a holistic approach which is necessary and sufficient to create ethical businesses.

scholarly journals Does the Hunting Act 2004 adequately prevent the killing of foxes?

2019 ◽  
Vol 1 (1) ◽  
pp. 47-57
Author(s):  
Paige Austen ◽  
Nusrat Ahmed ◽  
Monika Adaemic ◽  
Shan Ahmed ◽  
Travis Aithawaite
Keyword(s):  
United Kingdom ◽  
Ethical Issues ◽  
Social Attitudes ◽  
Wild Mammals ◽  
The Public ◽  
The United Kingdom ◽  
British Culture

Foxes have been hunted for decades in the United Kingdom due to it being an essential part of British culture. However, nowadays the public are strongly against fox hunting. This is evident from The Hunting Act 2004 (Act 04) being enforced to protect wild mammals. Despite the Act being in effect there have been cases where suspected hunters have gotten away with being convicted of hunting as a result of loopholes within the current legislation. Therefore in order to improve the effectiveness of the Act it must be built upon. Through analysing the Act itself alongside cases, ethical issues of hunting and changing social attitudes, we will consider whether the Act can be altered so that it can adequately prevent the killing of foxes.

Sign in / Sign up

Export Citation Format

Share Document