scholarly journals The Ethics of Consent in a Shifting Genomic Ecosystem

2021 ◽  
Vol 4 (1) ◽  
pp. 145-164
Author(s):  
Sandra Soo-Jin Lee
Keyword(s):  
Large Scale ◽  
Ethical Issues ◽  
Genetic Data ◽  
Careful Consideration ◽  
Genomic Research ◽  
Individual Autonomy ◽  
Ethical Trade ◽  
Competing Interests ◽  
Learning Health System ◽  
Trade Offs

The collection and use of human genetic data raise important ethical questions about how to balance individual autonomy and privacy with the potential for public good. The proliferation of local, national, and international efforts to collect genetic data and create linkages to support large-scale initiatives in precision medicine and the learning health system creates new demands for broad data sharing that involve managing competing interests and careful consideration of what constitutes appropriate ethical trade-offs. This review describes these emerging ethical issues with a focus on approaches to consent and issues related to justice in the shifting genomic research ecosystem.

scholarly journals Ethical and public policy challenges for pharmacogenomics

2014 ◽  
Vol 16 (4) ◽  
pp. 567-574 ◽  
Keyword(s):  
Psychiatric Disorders ◽  
Large Scale ◽  
Ethical Issues ◽  
De Novo ◽  
Correct Choice ◽  
Genomic Research ◽  
Drug Metabolizing Enzyme ◽  
Increased Risk ◽  
Number Variation ◽  
Metabolizing Enzyme

It is timely to consider the ethical and social questions raised by progress in pharmacogenomics, based on the current importance of pharmacogenomics for avoidance of predictable side effects of drugs, and for correct choice of medications in certain cancers. It has been proposed that the entire population be genotyped for drug-metabolizing enzyme polymorphisms, as a measure that would prevent many untoward and dangerous drug reactions. Pharmacologic treatment targeting based on genomics of disease can be expected to increase greatly in the coming years. Policy and ethical issues exist on consent for large-scale genomic pharmacogenomic data collection, public vs corporate ownership of genomic research results, testing efficacy and safety of drugs used for rare genomic indications, and accessibility of treatments based on costly research that is applicable to relatively few patients. In major psychiatric disorders and intellectual deficiency, rare and de novo deletion or duplication of chromosomal segments (copy number variation), in the aggregate, are common causes of increased risk. This implies that the policy problems of pharmacogenomics will be particularly important for the psychiatric disorders.

Sharing personal genetic information: the impact of privacy concern and awareness of benefit

2016 ◽  
Vol 14 (3) ◽  
pp. 288-308 ◽  
Author(s):  
Don Heath ◽  
Ali Ardestani ◽  
Hamid Nemati
Keyword(s):  
Medical Research ◽  
Private Information ◽  
Structural Equation ◽  
Large Scale ◽  
Genetic Data ◽  
Genomic Research ◽  
Equation Modeling ◽  
Privacy Concern ◽  
Content Type ◽  
The Impact

Purpose Human genomic research (HGR) demands very large pools of data to generate meaningful inference. Yet, the sharing of one’s genetic data for research is a voluntary act. The collection of data sufficient to fuel rapid advancement is contingent on individuals’ willingness to share. Privacy risks associated with sharing this unique and intensely personal data are significant. Genetic data are an unambiguous identifier. Public linkage of donor to their genetic data could reveal predisposition to diseases, behaviors, paternity, heredity, intelligence, etc. The purpose of this paper is to understand individuals’ willingness to volunteer their private information in this high-risk/high-reward context. Design/methodology/approach The authors collect survey data from 273 respondents and use structural equation modeling techniques to analyze responses. Findings The authors find statistical support for our theorization. They find that while heightened awareness of the benefits and risks of sharing correlates with increased privacy concerns, the net impact is an increase in intention to share. Social implications The findings suggest that prescriptive awareness might be an effective tool with which policy-makers can gain the sufficient voluntary participation from individuals necessary to drive large-scale medical research. Originality/value This study contributes a theoretically and empirically informed model which demonstrates the impact of awareness and privacy concern on individuals’ willingness to share their genetic data for large-scale HGR. It helps inform a rising class of data sufficiency problems related to large-scale medical research.

Next-Generation Sequencing: An Emerging Tool for Drug Designing

2019 ◽  
Vol 25 (31) ◽  
pp. 3350-3357 ◽  
Author(s):  
Pooja Tripathi ◽  
Jyotsna Singh ◽  
Jonathan A. Lal ◽  
Vijay Tripathi
Keyword(s):  
Next Generation Sequencing ◽  
High Throughput ◽  
Large Scale ◽  
Massively Parallel Sequencing ◽  
Genomic Research ◽  
Biological Research ◽  
Next Generation ◽  
Human Welfare ◽  
Drug Designing ◽  
Generation Sequencing

Background: With the outbreak of high throughput next-generation sequencing (NGS), the biological research of drug discovery has been directed towards the oncology and infectious disease therapeutic areas, with extensive use in biopharmaceutical development and vaccine production. Method: In this review, an effort was made to address the basic background of NGS technologies, potential applications of NGS in drug designing. Our purpose is also to provide a brief introduction of various Nextgeneration sequencing techniques. Discussions: The high-throughput methods execute Large-scale Unbiased Sequencing (LUS) which comprises of Massively Parallel Sequencing (MPS) or NGS technologies. The Next geneinvolved necessarily executes Largescale Unbiased Sequencing (LUS) which comprises of MPS or NGS technologies. These are related terms that describe a DNA sequencing technology which has revolutionized genomic research. Using NGS, an entire human genome can be sequenced within a single day. Conclusion: Analysis of NGS data unravels important clues in the quest for the treatment of various lifethreatening diseases and other related scientific problems related to human welfare.

Biosecurity and Public Health Ethics Issues Raised by Biological Threats

2019 ◽  
pp. 773-785
Author(s):  
Nicholas Evans ◽  
Thomas Inglesby
Keyword(s):  
Public Health ◽  
Resource Allocation ◽  
Infectious Diseases ◽  
Ethical Issues ◽  
Emerging Infectious Diseases ◽  
Biological Weapon ◽  
Ethical Values ◽  
Dual Use ◽  
Health Concerns ◽  
Trade Offs

This chapter introduces ethical issues that arise in the context of biosecurity: policies and actions intended to prevent the development or emergence, or mitigate the consequences, of serious biological threats. These threats could include deliberate biological weapon attacks (bioterrorism), pandemics, emerging infectious diseases, or major laboratory accidents. The basic values that underpin these public health concerns are first introduced. Ethical issues that arise before, during, and following a biosecurity crisis are then examined, including issues of resource allocation, dual-use research, and the possibility of quarantine. Their resolution requires trade-offs among different ethical values, including utility, fairness, and liberty.

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 Mapping the adaptive landscape of a major agricultural pathogen reveals evolutionary constraints across heterogeneous environments

2021 ◽  
Author(s):  
Anik Dutta ◽  
Fanny E. Hartmann ◽  
Carolina Sardinha Francisco ◽  
Bruce A. McDonald ◽  
Daniel Croll
Keyword(s):  
Life History ◽  
Large Scale ◽  
Life History Traits ◽  
Genetic Correlations ◽  
Stress Factors ◽  
Life History Trait ◽  
Adaptive Landscape ◽  
Heterogeneous Environments ◽  
Growth Responses ◽  
Trade Offs

AbstractThe adaptive potential of pathogens in novel or heterogeneous environments underpins the risk of disease epidemics. Antagonistic pleiotropy or differential resource allocation among life-history traits can constrain pathogen adaptation. However, we lack understanding of how the genetic architecture of individual traits can generate trade-offs. Here, we report a large-scale study based on 145 global strains of the fungal wheat pathogen Zymoseptoria tritici from four continents. We measured 50 life-history traits, including virulence and reproduction on 12 different wheat hosts and growth responses to several abiotic stressors. To elucidate the genetic basis of adaptation, we used genome-wide association mapping coupled with genetic correlation analyses. We show that most traits are governed by polygenic architectures and are highly heritable suggesting that adaptation proceeds mainly through allele frequency shifts at many loci. We identified negative genetic correlations among traits related to host colonization and survival in stressful environments. Such genetic constraints indicate that pleiotropic effects could limit the pathogen’s ability to cause host damage. In contrast, adaptation to abiotic stress factors was likely facilitated by synergistic pleiotropy. Our study illustrates how comprehensive mapping of life-history trait architectures across diverse environments allows to predict evolutionary trajectories of pathogens confronted with environmental perturbations.

scholarly journals Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

2021 ◽  
Vol 15 (1) ◽  
Author(s):  
S. Mezinska ◽  
L. Gallagher ◽  
M. Verbrugge ◽  
E.M. Bunnik
Keyword(s):  
Informed Consent ◽  
Neurodevelopmental Disorders ◽  
Cognitive Abilities ◽  
Social Impact ◽  
Mental Health Problems ◽  
Ethical Issues ◽  
Family Members ◽  
Genetic Diagnosis ◽  
Research Participation ◽  
Genomic Research

Abstract Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of research participants, and communication of research results. Ethical issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of their potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. Additionally, there are informational risks: learning genetic information about NDD may have psychological and social impact, not only for the research participant but also for family members. However, there are potential benefits associated with research participation, too: by enrolling in research, the participants may access genetic testing and thus increase their chances of receiving a (genetic) diagnosis for their neurodevelopmental symptoms, prognostic or predictive information about disease progression or the risk of concurrent future disorders. Based on the results of our review, we developed an ethics checklist for genomic research involving children affected by NDDs. Conclusions In setting up and designing genomic research efforts in NDD, researchers should partner with communities of persons with NDDs. Particular attention should be paid to preventing disproportional burdens of research participation of children with NDDs and their siblings, parents and other family members. Researchers should carefully tailor the information and informed consent procedures to avoid therapeutic and diagnostic misconception in NDD research. To better anticipate and address ethical issues in specific NDD studies, we suggest researchers to use the ethics checklist for genomic research involving children affected by NDDs presented in this paper.

scholarly journals An integrated life cycle and water footprint assessment of nonfood crops based bioenergy production

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Jun Li ◽  
Fengyin Xiong ◽  
Zhuo Chen
Keyword(s):  
Life Cycle ◽  
Environmental Sustainability ◽  
Large Scale ◽  
Water Footprint ◽  
Arable Land ◽  
Integrated Analysis ◽  
Actual Performance ◽  
Bioenergy Production ◽  
Trade Offs ◽  
Hybrid Pennisetum

AbstractBiomass gasification, especially distribution to power generation, is considered as a promising way to tackle global energy and environmental challenges. However, previous researches on integrated analysis of the greenhouse gases (GHG) abatement potentials associated with biomass electrification are sparse and few have taken the freshwater utilization into account within a coherent framework, though both energy and water scarcity are lying in the central concerns in China’s environmental policy. This study employs a Life cycle assessment (LCA) model to analyse the actual performance combined with water footprint (WF) assessment methods. The inextricable trade-offs between three representative energy-producing technologies are explored based on three categories of non-food crops (maize, sorghum and hybrid pennisetum) cultivated in marginal arable land. WF results demonstrate that the Hybrid pennisetum system has the largest impact on the water resources whereas the other two technology options exhibit the characteristics of environmental sustainability. The large variances in contribution ratio between the four sub-processes in terms of total impacts are reflected by the LCA results. The Anaerobic Digestion process is found to be the main contributor whereas the Digestate management process is shown to be able to effectively mitigate the negative environmental impacts with an absolute share. Sensitivity analysis is implemented to detect the impacts of loss ratios variation, as silage mass and methane, on final results. The methane loss has the largest influence on the Hybrid pennisetum system, followed by the Maize system. Above all, the Sorghum system demonstrates the best performance amongst the considered assessment categories. Our study builds a pilot reference for further driving large-scale project of bioenergy production and conversion. The synergy of combined WF-LCA method allows us to conduct a comprehensive assessment and to provide insights into environmental and resource management.

scholarly journals System design for inferring colony-level pollination activity through miniature bee-mounted sensors

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Haron M. Abdel-Raziq ◽  
Daniel M. Palmer ◽  
Phoebe A. Koenig ◽  
Alyosha C. Molnar ◽  
Kirstin H. Petersen
Keyword(s):  
Data Acquisition ◽  
Honey Bees ◽  
Large Scale ◽  
Physical World ◽  
Cluttered Environments ◽  
Robotic Mapping ◽  
Large Scale Data ◽  
Trade Offs ◽  
Large Numbers ◽  
Engineered Systems

AbstractIn digital agriculture, large-scale data acquisition and analysis can improve farm management by allowing growers to constantly monitor the state of a field. Deploying large autonomous robot teams to navigate and monitor cluttered environments, however, is difficult and costly. Here, we present methods that would allow us to leverage managed colonies of honey bees equipped with miniature flight recorders to monitor orchard pollination activity. Tracking honey bee flights can inform estimates of crop pollination, allowing growers to improve yield and resource allocation. Honey bees are adept at maneuvering complex environments and collectively pool information about nectar and pollen sources through thousands of daily flights. Additionally, colonies are present in orchards before and during bloom for many crops, as growers often rent hives to ensure successful pollination. We characterize existing Angle-Sensitive Pixels (ASPs) for use in flight recorders and calculate memory and resolution trade-offs. We further integrate ASP data into a colony foraging simulator and show how large numbers of flights refine system accuracy, using methods from robotic mapping literature. Our results indicate promising potential for such agricultural monitoring, where we leverage the superiority of social insects to sense the physical world, while providing data acquisition on par with explicitly engineered systems.

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