Ethical, Legal, and Counseling Challenges Surrounding the Return of Genetic Results in Oncology

2013 ◽  
Vol 31 (15) ◽  
pp. 1842-1848 ◽  
Author(s):  
Martijn P. Lolkema ◽  
Christa G. Gadellaa-van Hooijdonk ◽  
Annelien L. Bredenoord ◽  
Peter Kapitein ◽  
Nancy Roach ◽  
...  
Keyword(s):  
Anticancer Agents ◽  
Genetic Information ◽  
Large Scale ◽  
Personal Autonomy ◽  
Cancer Genetics ◽  
Legal Framework ◽  
Hereditary Disease ◽  
Patients With Cancer ◽  
Next Generation Sequencing Ngs ◽  
Genetic Results

In the last decade, an overwhelming number of genetic aberrations have been discovered and linked to the development of treatment for cancer. With the rapid advancement of next-generation sequencing (NGS) techniques, it is expected that large-scale DNA analyses will increasingly be used to select patients for treatment with specific anticancer agents. Personalizing cancer treatment has many advantages, but sequencing germline DNA as reference material for interpreting cancer genetics may have consequences that extend beyond providing cancer care for an individual patient. In sequencing germline DNA, mutations may be encountered that are associated with increased susceptibility not only to hereditary cancer syndromes but also to other diseases; in those cases, disclosing germline data could be clinically relevant and even lifesaving. In the context of personal autonomy, it is necessary to develop an ethical and legal framework for how to deal with identified hereditary disease susceptibilities and how to return the data to patients and their families. Because clear legislation is lacking, we need to establish guidelines on disclosure of genetic information and, in the process, we need to balance privacy issues with the potential advantages and drawbacks of sharing genetic data with patients and their relatives. Importantly, a strong partnership with patients is critical for understanding how to maximize the translation of genetic information for the benefit of patients with cancer. This review discusses the ethical, legal, and counseling issues surrounding disclosure of genetic information generated by NGS to patients with cancer and their relatives. We also provide a framework for returning these genetic results by proposing a design for a qualified disclosure policy.

Utopias of One

2019 ◽  
Author(s):  
Joshua Kotin
Keyword(s):  
United States ◽  
Soviet Union ◽  
World War I ◽  
Large Scale ◽  
Jim Crow ◽  
Personal Autonomy ◽  
The United States ◽  
Soviet Period ◽  
Original Research ◽  
The Soviet Union

This book is a new account of utopian writing. It examines how eight writers—Henry David Thoreau, W. E. B. Du Bois, Osip and Nadezhda Mandel'shtam, Anna Akhmatova, Wallace Stevens, Ezra Pound, and J. H. Prynne—construct utopias of one within and against modernity's two large-scale attempts to harmonize individual and collective interests: liberalism and communism. The book begins in the United States between the buildup to the Civil War and the end of Jim Crow; continues in the Soviet Union between Stalinism and the late Soviet period; and concludes in England and the United States between World War I and the end of the Cold War. In this way it captures how writers from disparate geopolitical contexts resist state and normative power to construct perfect worlds—for themselves alone. The book contributes to debates about literature and politics, presenting innovative arguments about aesthetic difficulty, personal autonomy, and complicity and dissent. It models a new approach to transnational and comparative scholarship, combining original research in English and Russian to illuminate more than a century and a half of literary and political history.

scholarly journals Mapping ‘wild zones’ of globalisation: on private actors and the rule of law

2021 ◽  
Vol 17 (1) ◽  
pp. 107-113
Author(s):  
Chantal Mak
Keyword(s):  
Global Economy ◽  
Large Scale ◽  
Legal Framework ◽  
International Investments ◽  
Goods And Services ◽  
Decision Making Processes ◽  
Private Corporations ◽  
Comprehensive Framework ◽  
Private Actors ◽  
The Impact

While private corporations have become increasingly influential in the global economy, a comprehensive legal framework for their activities is missing. Although international and regional legal instruments may govern some aspects of, for instance, international investments and the supply of goods and services, there is no overarching structure for assessing the impact of large-scale private projects. In the absence of such a comprehensive framework, specific rules of private law allow profit-seeking companies to expand their activities on an economic basis, mostly without having to heed social concerns (Pistor, 2019). This is particularly problematic insofar as multinational companies have obtained power to set the rules for their engagement with states, organisations and individuals, for instance in the form of transnational investment contracts. Given the fragmented nature of the legal sphere in which such contracts are elaborated and performed, those who face the harmful consequences of such investments may not be able to participate in decision-making processes. The contracts remain in ‘wild zones’ of globalisation (Fraser, 2014, p. 150), where powerful private companies rule.

scholarly journals Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records

2020 ◽  
Vol 11 (05) ◽  
pp. 755-763
Author(s):  
Shibani Kanungo ◽  
Jayne Barr ◽  
Parker Crutchfield ◽  
Casey Fealko ◽  
Neelkamal Soares
Keyword(s):  
Genetic Testing ◽  
Best Practices ◽  
Health Care Providers ◽  
Genetic Information ◽  
Ethical Issues ◽  
Interdisciplinary Approach ◽  
Care Providers ◽  
Ethical Considerations ◽  
Electronic Health ◽  
Genetic Results

Abstract Background Advances in technology and access to expanded genetic testing have resulted in more children and adolescents receiving genetic testing for diagnostic and prognostic purposes. With increased adoption of the electronic health record (EHR), genetic testing is increasingly resulted in the EHR. However, this leads to challenges in both storage and disclosure of genetic results, particularly when parental results are combined with child genetic results. Privacy and Ethical Considerations Accidental disclosure and erroneous documentation of genetic results can occur due to the nature of their presentation in the EHR and documentation processes by clinicians. Genetic information is both sensitive and identifying, and requires a considered approach to both timing and extent of disclosure to families and access to clinicians. Methods This article uses an interdisciplinary approach to explore ethical issues surrounding privacy, confidentiality of genetic data, and access to genetic results by health care providers and family members, and provides suggestions in a stakeholder format for best practices on this topic for clinicians and informaticians. Suggestions are made for clinicians on documenting and accessing genetic information in the EHR, and on collaborating with genetics specialists and disclosure of genetic results to families. Additional considerations for families including ethics around results of adolescents and special scenarios for blended families and foster minors are also provided. Finally, administrators and informaticians are provided best practices on both institutional processes and EHR architecture, including security and access control, with emphasis on the minimum necessary paradigm and parent/patient engagement and control of the use and disclosure of data. Conclusion The authors hope that these best practices energize specialty societies to craft practice guidelines on genetic information management in the EHR with interdisciplinary input that addresses all stakeholder needs.

Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics

2017 ◽  
Vol 16 (3) ◽  
pp. 447-457 ◽  
Author(s):  
Benjamin Derbez ◽  
Antoine de Pauw ◽  
Dominique Stoppa-Lyonnet ◽  
Sandrine de Montgolfier
Keyword(s):  
Professional Practice ◽  
Genetic Information ◽  
Cancer Genetics ◽  
Family Members

EARRINGS: an efficient and accurate adapter trimmer entails no a priori adapter sequences

2021 ◽  
Author(s):  
Ting-Hsuan Wang ◽  
Cheng-Ching Huang ◽  
Jui-Hung Hung
Keyword(s):  
Open Source Software ◽  
Large Scale ◽  
A Priori ◽  
Supplementary Information ◽  
Supplementary Data ◽  
Comparable Accuracy ◽  
Meta Analyses ◽  
Next Generation Sequencing Ngs ◽  
Adapter Trimming ◽  
Generation Sequencing

Abstract Motivation Cross-sample comparisons or large-scale meta-analyses based on the next generation sequencing (NGS) involve replicable and universal data preprocessing, including removing adapter fragments in contaminated reads (i.e. adapter trimming). While modern adapter trimmers require users to provide candidate adapter sequences for each sample, which are sometimes unavailable or falsely documented in the repositories (such as GEO or SRA), large-scale meta-analyses are therefore jeopardized by suboptimal adapter trimming. Results Here we introduce a set of fast and accurate adapter detection and trimming algorithms that entail no a priori adapter sequences. These algorithms were implemented in modern C++ with SIMD and multithreading to accelerate its speed. Our experiments and benchmarks show that the implementation (i.e. EARRINGS), without being given any hint of adapter sequences, can reach comparable accuracy and higher throughput than that of existing adapter trimmers. EARRINGS is particularly useful in meta-analyses of a large batch of datasets and can be incorporated in any sequence analysis pipelines in all scales. Availability and implementation EARRINGS is open-source software and is available at https://github.com/jhhung/EARRINGS. Supplementary information Supplementary data are available at Bioinformatics online.

Effect of Sucrose on Cisplatin-induced Fatigue-like Behavior in Mice: Comparison With Fructose and Glucose

2021 ◽  
Vol 1 (2) ◽  
pp. 95-102
Author(s):  
KAZUMI YOSHIZAWA ◽  
RUKA KURONO ◽  
HARUKA SATO ◽  
ERIKA ISHIJIMA ◽  
HARUKA NASU ◽  
...  
Keyword(s):  
Tumor Growth ◽  
Anticancer Agents ◽  
Saline Control ◽  
Common Symptom ◽  
Antitumor Effects ◽  
Patients With Cancer ◽  
Cancer Related Fatigue ◽  
Running Activity ◽  
Glucose Intake

Background/Aim: Fatigue is the most common symptom in patients with cancer undergoing radiation therapy or cancer chemotherapy. However, cancer-related fatigue remains undertreated and poorly understood. Materials and Methods: Mice were administered a single dose of cisplatin (10 mg/kg, intraperitoneally) or saline (as a control) and then treated with sucrose, fructose, glucose (each at 500 or 5,000 mg/kg, orally), or saline (control) daily for 4 days. cisplatin-induced fatigue-like behavior was investigated by assessment of running activity on a treadmill. The influence of glucose intake on tumor growth was also examined in Lewis lung carcinoma (LLC)-bearing mice. Results: Administration of sucrose and glucose improved cisplatin-induced fatigue-like behavior in mice, whereas administration of fructose showed only slight antifatigue effects. Although glucose-fed mice showed increased tumor growth, this was balanced out by the powerful cytotoxicity of cisplatin. Conclusion: Sucrose, and especially glucose, may improve patient quality of life during treatment with anticancer agents by preventing fatigue without interfering with the antitumor effects of cisplatin.

Territorial Governance of EU Cross-Border Renewable Energy Cooperation: A Soluble or Turbulent Model in the Current Framework?

2021 ◽  
Vol 2 (1) ◽  
pp. 79-97
Author(s):  
Melis Aras
Keyword(s):  
Renewable Energy ◽  
Large Scale ◽  
Planning Process ◽  
Renewable Energy Sources ◽  
Local Level ◽  
Energy Transition ◽  
Clean Energy ◽  
Legal Framework ◽  
Development Planning ◽  
Cross Border

The energy transition in Europe requires not only the implementation of technological innovations to reduce carbon emissions but also the decentralised extension of these innovations throughout the continent, as demonstrated by the ‘Clean Energy for All Europeans’ package. However, decentralised energy generation, and specifically electricity generation, as it gives rise to new players and interactions, also requires a review of the energy planning process. In this sense, governance becomes the key concept for understanding the implementation of the energy transition in a territory. This is particularly visible in a cross-border setting, especially considering cross-border cooperation in the development of renewable energy sources (RES) provides the necessary elements to determine the criteria of local regulation between the different levels of governance. In light of the current legal framework in France, this paper presents the institutional framework of the multi-level governance of the RES development planning process. It concludes that it is quite conceivable for the rationales of governance at the local level (decentralisation) and the large-scale operation of a large interconnected network (Europeanisation) to coexist.

scholarly journals Genetic discrimination: emerging ethical challenges in the context of advancing technology

2019 ◽  
Author(s):  
Carolyn Riley Chapman ◽  
Kripa Sanjay Mehta ◽  
Brendan Parent ◽  
Arthur L Caplan
Keyword(s):  
Health Insurance ◽  
Genetic Testing ◽  
Genetic Information ◽  
Predictive Power ◽  
The United States ◽  
Legal Framework ◽  
Genetic Discrimination ◽  
Ethical Challenges ◽  
Health Related ◽  
Discrimination In Employment

Abstract Genetic testing is becoming more widespread, and its capabilities and predictive power are growing. In this paper, we evaluate the ethical justifications for and strength of the US legal framework that aims to protect patients, research participants, and consumers from genetic discrimination in employment and health insurance settings in the context of advancing genetic technology. The Genetic Information Nondiscrimination Act (GINA) and other laws prohibit genetic and other health-related discrimination in the United States, but these laws have significant limitations, and some provisions are under threat. If accuracy and predictive power increase, specific instances of use of genetic information by employers may indeed become ethically justifiable; however, any changes to laws would need to be adopted cautiously, if at all, given that people have consented to genetic testing with the expectation that there would be no genetic discrimination in employment or health insurance settings. However, if our society values access to healthcare for both the healthy and the sick, we should uphold strict and broad prohibitions against genetic and health-related discrimination in the context of health insurance, including employer-based health insurance. This is an extremely important but often overlooked consideration in the current US debate on healthcare.

scholarly journals A Review of the Canada Petroleum Resources Act and the Canada Oil and Gas Operations Act as the Legal Framework for Future Development in the Northwest Territories

2002 ◽  
Vol 40 (1) ◽  
pp. 83
Author(s):  
Raymond E. Quesnel
Keyword(s):  
Northwest Territories ◽  
Large Scale ◽  
Oil And Gas ◽  
East Coast ◽  
Historical Analysis ◽  
Legal Framework ◽  
Tenure System ◽  
Petroleum Resources ◽  
Legislative Framework ◽  
Oil And Gas Operations

This article examines the current core legislation that governs oil and gas activity in Canada's North. While there has been increased industry interest in the Northwest Territories, there has thus far been a lack of actual oil and gas projects against which to measure the efficacy of the current regime in the context of northern development. An historical analysis of the legislative developments indicates that the northern regime formed the basis for the legislative framework now governing east coast megaprojects. The author evaluates the current basis on which rights are granted and recorded, the tenure system, the royalty regime, and the project approval process. He concludes that, while the northern regime is suitable for large scale developments, it may require certain changes to accommodate smaller, more conventional projects likely to be undertaken.

Sign in / Sign up

Export Citation Format

Share Document