Applying Ethical Theories to Genetic Counseling Practice

2019 ◽  
pp. 89-110
Author(s):  
Barbara B. Biesecker ◽  
Kathryn F. Peters ◽  
Robert Resta
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Ethical Issues ◽  
Brca Mutation ◽  
Ethical Framework ◽  
Feminist Ethics ◽  
Ethical Frameworks ◽  
Testing Technology ◽  
Ethical Approaches ◽  
The Common

Genetic counseling engenders thorny ethical issues that expand as genetic testing technology continues to evolve. Genetic counselors are frequently faced with bioethical dilemmas that, by their very nature, are not easily resolved. This chapter reviews some of the common ethical frameworks for considering ethically complex situations—deontology, casuistry, principilism, and feminist ethics. These ethical approaches are illustrated by applying them to a case of a mother who is a BRCA mutation carrier and is trying to make a decision about genetic testing for her fourteen-year-old daughter. No one ethical framework will be applicable to all genetic counseling dilemmas, but familiarity with these different approaches can help counselors better understand the value of each approach in assessing a variety of clinical situations. A model is presented showing how to manage, think about, and think through ethical dilemmas.

Ethics and equity in rare disease research and healthcare

2021 ◽  
Author(s):  
Maria Koromina ◽  
Vasileios Fanaras ◽  
Gareth Baynam ◽  
Christina Mitropoulou ◽  
George P Patrinos
Keyword(s):  
Rare Diseases ◽  
Ethical Issues ◽  
Genetic Diseases ◽  
Ethical Framework ◽  
Middle Income ◽  
Next Generation Sequencing Technology ◽  
Ethical Frameworks ◽  
Rare Genetic Diseases ◽  
Conducting Research ◽  
Key Aspects

Rapid advances in next-generation sequencing technology, particularly whole exome sequencing and whole genome sequencing, have greatly affected our understanding of genetic variation underlying rare genetic diseases. Herein, we describe ethical principles of guiding consent and sharing of genomics research data. We also discuss ethical dilemmas in rare diseases research and patient recruitment policies and address bioethical and societal aspects influencing the ethical framework for genetic testing. Moreover, we focus on addressing ethical issues surrounding research in low- and middle-income countries. Overall, this perspective aims to address key aspects and issues for building proper ethical frameworks, when conducting research involving genomics data with a particular emphasis on rare diseases and genetics testing.

scholarly journals Humanitarian Communication Through the Lens of Feminist Ethics of Care

2021 ◽  
Vol 13 (1) ◽  
pp. 17-36
Author(s):  
Houda Houbeish
Keyword(s):  
Common Ground ◽  
Ethics Of Care ◽  
Added Value ◽  
Ethical Principles ◽  
Ethical Framework ◽  
Feminist Ethics ◽  
Role Morality ◽  
Humanitarian Ethics ◽  
The Common

Ethics are the driving force of the humanitarian field, a domain that has been governed by general and universal ethical principles. Researchers have largely focused on studying the organizational commitment to these principles, paying less attention to the role-specific ethics of this field. Moreover, researchers who consider the humanitarian field from a media studies lens have often focused on media representation, while questions about communication as practice are sidelined. In this paper, I approach humanitarian ethics with a particular focus on role morality and communication practices. With a particular focus on the role of a humanitarian communications specialist, I argue, in this paper, that the feminist ethics of care is a useful ethical framework that can guide communication specialists to better practices when they are in the field of operation. I also answer the following research questions: What are the main ethical principles that humanitarian communication specialists are expected to observe as humanitarians? Why are these principles insufficient? How might feminist ethics of care fill the gap left by current humanitarian principles and what would be the added value of this framework for practicing humanitarian communication? To answer, I ground my approach in an experiential understanding built from my personal experience as a humanitarian communications specialist. Second, I offer a literature review to highlight the common ground between humanitarian ethics and the feminist ethics of care and the added value of the feminist ethics of care why applied by humanitarian communication specialists. Third, I provide some examples of communications practices that may follow the feminist ethics of care model.  

scholarly journals Epistemic and ethical considerations in the direct-to-consumer health and ancestry genetic testing process

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Katherine Huerne
Keyword(s):  
Genetic Testing ◽  
Quantitative Methods ◽  
Ethical Issues ◽  
Social Issues ◽  
Clear Understanding ◽  
Feminist Ethics ◽  
Ethical Considerations ◽  
Ethical Implications ◽  
Direct To Consumer ◽  
The Cost

Background: Direct-to-consumer genetic testing (DTC-GT) is a popular and fast-growing field within the healthcare industry. Consumers often pursue DTC-GT without a clear understanding of its epistemic and medical limitations. This report will present the current state of DTC-GT technology, and highlight the ethical, legal and social issues of DTC-GT. Methods: Quantitative methods such as systematic reviews were used to evaluate the field of DTC-GT. Experimental data was taken from randomized control trials and case studies of 23andMe. Qualitative methods such as newspaper articles and surveys were also used. Relevant policies and regulatory information were analyzed in the context of 23andMe. Broader ethical issues are analyzed from the social disability model and feminist ethics frameworks. Results: Several aspects of direct-to-consumer genetic testing are outlined: (i) regulatory and legal distinctions of DTC-GT that separate its use from conventional genetic testing, (ii) epistemic issues of the genetic testing process within the direct-to-consumer context, and (iii) ethical considerations of DTC-GT in regard to genetic health and genetic ancestry. Conclusion: This report does not take a position for or against the use of DTC-GT; rather, it highlights the key ethical issues often missed in the DTC-GT process. There is no perfect method for understanding genetic health and race. DTC-GT offer consumers the ease and power of taking genetic data ‘in their own hands’, at the cost of exacerbating geneticization and race essentialism. Until further work is done to address the epistemic, regulatory and legal issues, ethical implications of DTC-GT usage will continue to exist.

Changing Ethical Frameworks: From Individual Rights to the Common Good?

2011 ◽  
Vol 20 (4) ◽  
pp. 533-545 ◽  
Author(s):  
MARGIT SUTROP
Keyword(s):  
Common Good ◽  
Ethical Issues ◽  
Conceptual Base ◽  
Ethical Frameworks ◽  
Long Period ◽  
Political Ideologies ◽  
The Common ◽  
The Individual ◽  
Liberal Individualism ◽  
The Relationship

Whereas in the 1970s early bioethicists believed that bioethics is an arena for the application of philosophical theories of utilitarianism, deontology, and natural law thinking, contemporary policy-oriented bioethicists seem rather to be keen on framing ethical issues through political ideologies. Bioethicists today are often labeled “liberal” or “communitarian,” referring to their different understandings of the relationship between the individual and society. Liberal individualism, with its conceptual base of autonomy, dignity, and privacy, enjoyed a long period of dominance in bioethics, but it has increasingly come under attack from ideologies promoting a more salient role for concepts of solidarity, community, and public interest.

A Crossroads in Genetic Counseling and Ethics

1998 ◽  
Vol 7 (1) ◽  
pp. 97-100 ◽  
Author(s):  
GLENN McGEE ◽  
MONICA ARRUDA
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Ethical Issues ◽  
Training Programs ◽  
Genome Project ◽  
Genetic Counselors ◽  
University Of Pennsylvania ◽  
Predictive Values ◽  
Counseling Training ◽  
Task Forces

Genetic counselors are on the front lines of the genetic revolution, presented with tests of varying predictive values and reliability, unfair testing distribution mechanisms, tests for conditions where no treatment exists, and companies that oversell the usefulness of their tests to physicians and nurses. Many scholars, both genetic testing task forces as well as the newly formed National Bioethics Advisory Commission, have all noted that genetic counseling programs and services are critical for adequate genetic testing. At the same time, in our own work at the University of Pennsylvania we have encountered many requests for new materials for training genetic counselors in ethics and providing ethics resources for genetic counseling. One of us has noted elsewhere that it is crucial that resources from the Human Genome Project, the Centers for Disease Control, and other public agencies be devoted to providing better resources for genetic counselors facing difficult ethical issues. Although the American Board of Genetic Counseling requires that training programs include some formal coursework in ethics, many wonder whether enough is being done to prepare genetic counselors for an ever-tougher job, and in particular there has been much concern expressed about whether “nondirectiveness” is an outmoded ideal that hampers this profession as it attempts to grow and identify the value of its practice. On the basis of many comments to us by genetic counselors and on the basis of our review of the current literature, we hypothesized that accredited genetic counseling training programs are poised at the turn of the century to begin planning a new approach to teaching the philosophy of genetic counseling, one that integrates philosophical, theoretical, and ethical training throughout the curriculum in genetic counseling.

Research ethics

2017 ◽  
Author(s):  
Daisy Fancourt
Keyword(s):  
Research Ethics ◽  
Vulnerable Populations ◽  
Ethical Issues ◽  
Research Projects ◽  
Health Practice ◽  
Consent Forms ◽  
Capacity To Consent ◽  
Ethical Frameworks ◽  
The Common ◽  
Arts In Health

Ethics are sometimes not considered relevant to arts interventions which appear unlikely to do harm and seemingly only offer benefits. However, this chapter will outline why ethics are so crucial to arts in health practice and research. It will outline at what stages of practice and research ethical issues can be involved, explore some of the common ethical issues that arise and their potential solutions, and situate this within some of the most common ethical frameworks and guidelines. The chapter will also focus in particular on gaining consent from participants, including from vulnerable populations such as children and those without the capacity to consent. And it will provide template information sheets and consent forms that can be adapted for research projects.

Thinking Ethically About Mobile Devices

2020 ◽  
pp. 620-636
Author(s):  
Charles Ess
Keyword(s):  
Cultural Differences ◽  
Mobile Devices ◽  
Ethical Issues ◽  
Personal Relationships ◽  
Ethical Challenges ◽  
Wide Audience ◽  
Ethical Frameworks ◽  
Wide Range ◽  
Ethical Approaches

The author introduces primary frameworks for analyzing and resolving common ethical issues evoked by mobile devices. These include prevailing ethical frameworks along with underlying assumptions about the nature of selfhood and identity—that is, as more individual or relational: the latter also help index important cultural differences in ethical approaches. The author shows how these apply in two exemplar cases: the Fairphone and “quantified relationship” (QR) apps. The two cases of the Fairphone and QR apps, as taking up broad issues of consumption and production as well as privacy, autonomy, and personal relationships, respectively, thus cover a relatively wide range of ethical issues relevant to a wide audience of “everyday” consumers and users. These analyses aim to also stand as examples and templates for further analyses of ethical challenges evoked by mobile devices.

scholarly journals An Ethical Framework for the Use of Horses in Competitive Sport: Theory and Function

Animals ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. 1725 ◽  
Author(s):  
Madeleine L. H. Campbell
Keyword(s):  
Ad Hoc ◽  
Ethical Issues ◽  
Theoretical Development ◽  
Ethical Framework ◽  
Ethical Frameworks ◽  
Social License ◽  
The Social ◽  
Sports Ethics ◽  
Equestrian Sport ◽  
And Function

Growing ethical concern about equestrian sport is reflected in publications by regulatory authorities, animal charities, and the lay press; and in government debate and social media. However, attempts by regulators and stakeholders to address ethical issues in equine sport have been discipline specific and ad hoc. Ethical frameworks can help stakeholders to make contextual decisions about what should or should not be done in a particular situation. However, when existing animal welfare frameworks and existing sports ethics frameworks are reviewed in this paper, it becomes clear that none provide us with a suitable or sufficient tool for considering ethical issues which can arise in situations where the athlete is a non-human, non-consenting participant. This paper presents the theoretical development of a novel ethical framework, with the aim of providing stakeholders with a tool which they might apply to the consideration of the ethical questions which inevitably arise in relation to (equestrian) sport. The derivation and limitations of the ethical framework are explained. The use of the framework will serve both to underwrite the continuation of the social license to use horses in sport and also to enable those within equestrian sport to critically assess existing and proposed practices and to make welfare-improving adjustments to practice if/where necessary. The theoretical framework as presented here is currently being practically tested and refined in consultation with industry stakeholders, and that research will be submitted for publication in due course.

scholarly journals Learning Analytics in Small-scale Teacher-led Innovations: Ethical and Data Privacy Issues

2016 ◽  
Vol 3 (1) ◽  
Author(s):  
María Jesús Rodríguez-Triana ◽  
Alejandra Martínez-Monés ◽  
Sara Villagrá-Sobrino
Keyword(s):  
Higher Education ◽  
Learning Analytics ◽  
Data Privacy ◽  
Ethical Issues ◽  
Three Dimensions ◽  
Ethical Framework ◽  
Small Scale ◽  
Ethical Frameworks ◽  
Learning Scenarios ◽  
Definition Of

As a further step towards maturity, the field of learning analytics (LA) is working on the definition of frameworks that structure the legal and ethical issues that scholars and practitioners must take into account when planning and applying LA solutions to their learning contexts. However, current efforts in this direction tend to be focused on institutional higher education approaches. This paper reflects on the need to extend these ethical frameworks to cover other approaches to LA; more concretely, small-scale classroom-oriented approaches that aim to support teachers in their practice. This reflection is based on three studies where we applied our teacher-led learning analytics approach in higher education and primary school contexts. We describe the ethical issues that emerged in these learning scenarios, and discuss them according to three dimensions: the overall learning analytics approach, the particular solution to learning analytics adopted, and the educational contexts where the analytics are applied. We see this effort as a first step towards the wider objective of providing a more comprehensive and adapted ethical framework to learning analytics that is able to address the needs of different learning analytics approaches and educational contexts.

Ethical Considerations in Neurogenetic Testing

2018 ◽  
Vol 38 (05) ◽  
pp. 505-514 ◽  
Author(s):  
Xiaowei Su ◽  
Zachary Simmons
Keyword(s):  
Genetic Testing ◽  
Ethical Issues ◽  
Diagnostic Testing ◽  
Ethical Principles ◽  
Ethical Framework ◽  
Complex Nature ◽  
Neurologic Diseases ◽  
Variants Of Unknown Significance ◽  
Unknown Significance ◽  
The One

AbstractRecent advances in the genetics of neurologic diseases coupled with improvements in sensitivity and specificity are making genetic testing an increasingly important part of diagnosis and management for neurologists. However, the complex nature of genetic testing, the nuances of multiple result types, and the short- and long-term consequences of genetic diagnoses raise important ethical issues for the clinician. Neurologists must balance the ethical principles of beneficence and nonmaleficence, on the one hand, with patient autonomy on the other hand, when ordering such tests by facilitating shared decision making, carrying out their fiduciary responsibilities to patients, and ensuring that patients have adequate counseling to make informed decisions. This review summarizes ethical issues related to genetic testing for neurologic diseases, with a focus on clinical practice. Informed consent for genetic testing of patients and asymptomatic at-risk family members is discussed. The roles and responsibilities of physicians as genetic counselors are reviewed, including the framing of incidental findings and variants of unknown significance that impact individuals' decisions about whether to pursue genetic testing and what results they wish to know. Disclosure and its consequences for the patient are placed within an ethical framework to permit a better understanding of why genetic testing is different from most other diagnostic testing ordered by physicians. The review ends with clinical vignettes that attempt to place ethical principles into familiar clinical settings involving physicians, patients and their families.

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