scholarly journals Ethical, Legal and Social Implications of Susceptibility Genetic Testing for Late-Onset Neurodegenerative Diseases

2018 ◽  
Author(s):  
Amaranta Manrique de Lara ◽  
Elisa Núñez-Acosta ◽  
Garbiñe Saruwatari-Zavala ◽  
Liliana Soto-Gómez ◽  
Miguel E. Rentería
Keyword(s):  
Genetic Testing ◽  
Complex Traits ◽  
Ethical Issues ◽  
Late Onset ◽  
Policy Implications ◽  
Technological Developments ◽  
Asymptomatic Individuals ◽  
Unexpected Findings ◽  
Privacy And Confidentiality ◽  
Disclosure Of Results

Over the last decade, advances in our understanding about the genetic architecture of complex traits and common diseases, have increased our ability to perform susceptibility genetic testing for diseases in asymptomatic individuals. These technological developments raise complex ethical, legal and social considerations. Here we discuss a series of ethical issues associated with susceptibility genetic testing for Alzheimer's and Parkinson's disease. These include, amongst others, informed consent, disclosure of results and unexpected findings, mandatory screening, privacy and confidentiality, and stigma and genetic discrimination. As knowledge of the genetic basis of these diseases continues growing, and as genetic testing becomes more widespread, we anticipate that it will become increasingly important for scientists and clinicians to engage in the conversation about the ethical, social and policy implications of these technologies.

scholarly journals Ethical issues in susceptibility genetic testing for late-onset neurodegenerative diseases

2018 ◽  
Vol 180 (8) ◽  
pp. 609-621 ◽  
Author(s):  
Amaranta Manrique de Lara ◽  
Liliana Soto-Gómez ◽  
Elisa Núñez-Acosta ◽  
Garbiñe Saruwatari-Zavala ◽  
Miguel E. Rentería
Keyword(s):  
Genetic Testing ◽  
Neurodegenerative Diseases ◽  
Ethical Issues ◽  
Late Onset

Confronting the grey zone after severe brain injury

2019 ◽  
Vol 3 (6) ◽  
pp. 707-711 ◽  
Author(s):  
Andrew Peterson ◽  
Adrian M. Owen
Keyword(s):  
Brain Injury ◽  
Ethical Issues ◽  
Vegetative State ◽  
Clinical Care ◽  
Grey Zone ◽  
Severe Brain Injury ◽  
New Methods ◽  
Legal Decision Making ◽  
Technological Developments ◽  
The Brain

In recent years, rapid technological developments in the field of neuroimaging have provided several new methods for revealing thoughts, actions and intentions based solely on the pattern of activity that is observed in the brain. In specialized centres, these methods are now being employed routinely to assess residual cognition, detect consciousness and even communicate with some behaviorally non-responsive patients who clinically appear to be comatose or in a vegetative state. In this article, we consider some of the ethical issues raised by these developments and the profound implications they have for clinical care, diagnosis, prognosis and medical-legal decision-making after severe brain injury.

The neuroethical future of wearable and mobile health technology

2017 ◽  
Author(s):  
Karola V. Kreitmair ◽  
Mildred K. Cho
Keyword(s):  
Mobile Health ◽  
Ethical Issues ◽  
Health Technology ◽  
The Self ◽  
Ethical Challenges ◽  
Mobile Health Technology ◽  
Healthcare Settings ◽  
Healthcare It ◽  
Mobile Mental Health ◽  
Privacy And Confidentiality

Wearable and mobile health technology is becoming increasingly pervasive, both in professional healthcare settings and with individual consumers. This chapter delineates the various functionalities of this technology and identifies its different purposes. It then addresses the ethical challenges that this pervasiveness poses in the areas of accuracy and reliability of the technology, privacy and confidentiality of data, consent, and the democratization of healthcare. It also looks at mobile mental health apps as a case study to elucidate the discussion of ethical issues. Finally, the chapter turns to the question of how this technology and the associated “quantification of the self” affect traditional modes of epistemic access to and phenomenological conceptions of the self.

Environmental Health Research and Ethics

2019 ◽  
pp. 753-764
Author(s):  
David B. Resnik
Keyword(s):  
Environmental Health ◽  
Health Research ◽  
Ethical Issues ◽  
Human Subjects ◽  
Environmental Interventions ◽  
Environmental Health Research ◽  
Research Designs ◽  
Research Regulations ◽  
Kennedy Krieger Institute ◽  
Privacy And Confidentiality

This chapter discusses some of the key ethical issues that arise in environmental health research involving human subjects, including returning individualized research results, protecting privacy and confidentiality, research on environmental interventions, intentional exposure studies, research regulations, autonomy, beneficence, informed consent, payments to subjects, and protecting vulnerable human subjects. The chapter will discuss issues that are common to all research designs, as well as those unique to certain types of designs, such as intentional exposure studies. It will also address ethical issues that arose in two important cases, the Kennedy Krieger Institute lead abatement study, and the Children’s Environmental Exposure Research Study.

The Changing Nature of Knowledge and Service Work in the Age of Intelligent Machines

2020 ◽  
pp. 343-368
Author(s):  
Crispin Coombs ◽  
Donald Hislop ◽  
Stanimira Taneva ◽  
Sarah Barnard
Keyword(s):  
Ethical Issues ◽  
Work Practice ◽  
Academic Disciplines ◽  
Service Work ◽  
Future Research ◽  
Human Capabilities ◽  
Academic Knowledge ◽  
Intelligent Machines ◽  
Technological Developments ◽  
The Impact

One of the most significant recent technological developments concerns the application of intelligent machines to jobs that up to now have been considered safe from automation. These changes have generated considerable debate regarding the impacts that the widespread adoption of intelligent machines could have on the nature of work. This chapter provides a thematic review, across multiple academic disciplines, of the current state of academic knowledge regarding the impact of intelligent machines on knowledge and service work. Adopting a work-practice perspective, the chapter reviews the extant literature concerning changing relations between workers and intelligent machines, the adoption and acceptance of intelligent machines, and ethical issues associated with greater machine human collaboration. A key finding is that much of the research discusses intelligent machines complementing and extending human capabilities rather than removing humans from work processes. The concept of augmentation of humans and human work, rather than wholesale replacement from automation, flows through the literature across a range of domains. The chapter concludes with a discussion of the main gaps in existing knowledge and ways in which future research may provide a deeper understanding of how people (currently and in the near future) experience intelligent machines in their day-to-day work practice. These include the need for multi-disciplinary research, the role of contexts, the need for more and better empirical research, the changing relationships between humans and intelligent machines, the adoption and acceptance of the technology, and ethical issues.

scholarly journals First French study relative to preconception genetic testing: 1500 general population participants’ opinion

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Valérie Bonneau ◽  
Mathilde Nizon ◽  
Xenia Latypova ◽  
Aurélie Gaultier ◽  
Eugénie Hoarau ◽  
...  
Keyword(s):  
Genetic Testing ◽  
General Population ◽  
Social Security ◽  
Genetic Disease ◽  
Ethical Issues ◽  
Family Doctor ◽  
Screening Strategy ◽  
Medical Prescription ◽  
Medical Progress ◽  
Increased Risk

Abstract Background Until very recently, preconception genetic testing was only conducted in particular communities, ethnic groups or families for which an increased risk of genetic disease was identified. To detect in general population a risk for a couple to have a child affected by a rare, recessive or X-linked, genetic disease, carrier screening is proposed in several countries. We aimed to determine the current public opinion relative to this approach in France, using either a printed or web-based questionnaire. Results Among the 1568 participants, 91% are favorable to preconception genetic tests and 57% declare to be willing to have the screening if the latter is available. A medical prescription by a family doctor or a gynecologist would be the best way to propose the test for 73%, with a reimbursement from the social security insurance. However, 19% declare not to be willing to use the test because of their ethic or moral convictions, and the fear that the outcome would question the pregnancy. Otherwise, most participants consider that the test is a medical progress despite the risk of an increased medicalization of the pregnancy. Conclusion This first study in France highlights a global favorable opinion for the preconception genetic carrier testing under a medical prescription and a reimbursement by social security insurance. Our results emphasize as well the complex concerns underpinned by the use of this screening strategy. Therefore, the ethical issues related to these tests include the risk of eugenic drift mentioned by more than half of the participants.

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.

scholarly journals Genetic Testing for Minors: Comparison between Italian and British Guidelines

2012 ◽  
Vol 2012 ◽  
pp. 1-4 ◽  
Author(s):  
Pamela Tozzo ◽  
Luciana Caenazzo ◽  
Daniele Rodriguez
Keyword(s):  
Clinical Practice ◽  
Genetic Testing ◽  
Ethical Issues ◽  
Social Issues ◽  
Carrier Testing ◽  
European Countries ◽  
National Guidelines ◽  
Common Framework ◽  
Professional Guidelines

Genetic testing in children raises many important ethical, legal, and social issues. One of the main concerns is the ethically inappropriate genetic testing of minors. Various European countries established professional guidelines which reflect the different countries perspectives regarding the main ethical issues involved. In this paper, we analyze the Italian and the British guidelines by highlighting differences and similarities. We discuss presymptomatic, predictive, and carrier testing because we consider them to be the more ethically problematic types of genetic testing in minors. In our opinion, national guidelines should take into account the different needs in clinical practice. At the same time, in the case of genetic testing the national and supranational protection of minors could be strengthened by approving guidelines based on a common framework of principles and values. We suggest that the Oviedo Convention could represent an example of such a common framework or, at least, it could lead to articulate it.

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