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.

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.

WhatsApp guidelines – what guidelines? A literature review

2019 ◽  
Vol 25 (9) ◽  
pp. 524-529 ◽  
Author(s):  
Maurice Mars ◽  
Christopher Morris ◽  
Richard E Scott
Keyword(s):  
Clinical Practice ◽  
Ethical Issues ◽  
Instant Messaging ◽  
Healthcare Delivery ◽  
Modern Society ◽  
Professional Communication ◽  
Sensitive Information ◽  
Inclusion Criteria ◽  
National Guidelines ◽  
Record Keeping

Introduction Instant messaging (IM) is pervasive in modern society, including healthcare. WhatsApp, the most cited IM application in healthcare, is used to share sensitive patient information between clinicians. Its use raises legal, regulatory and ethical concerns. Are there guidelines for the clinical use of WhatsApp? Can generic guidelines be developed for the use of IM, for one-to-one and one-to-many healthcare professional communication using WhatsApp as an example? Aim We aimed to investigate if there are guidelines for using WhatsApp in clinical practice. Method Nine electronic databases were searched in January 2019 for articles on WhatsApp in clinical service. Inclusion criteria: paper was in English, reported on WhatsApp use or potential use in clinical practice, addressed legal, regulatory or ethical issues and presented some form of guideline or guidance for WhatsApp use. Results In total, 590 unique articles were found and 167 titles and abstracts met the inclusion criteria. Twenty-one articles identified the need for general guidelines. Twelve articles provided some form of guidance for using WhatsApp. Issues addressed were confidentiality, identification and privacy (eight articles), security (seven), record keeping (four) and storage (three). Mandatory national guidelines for the use of IM for patient-sensitive information do not appear to exist, only advisories that counsel against its use. Conclusion The literature showed clinicians use IM because of its simplicity, timeliness and cost effectiveness. No suitable guidelines exist. Generic guidelines are required for the use of IM for healthcare delivery which can be adapted to local circumstance and messaging service used.

scholarly journals Ethical issues in dementia

2000 ◽  
Vol 2 (2) ◽  
pp. 162-167 ◽  
Keyword(s):  
Clinical Practice ◽  
Genetic Testing ◽  
End Of Life Care ◽  
Ethical Issues ◽  
Biological Tissues ◽  
Life Care ◽  
Research Issues ◽  
Therapeutic Goals ◽  
Diagnostic Disclosure ◽  
Number Of Individuals

The growing number of individuals affected by dementia will intensify the ethical issues that emerge in clinical practice and research, issues early in disease relate to genetic testing, use of medications in mildly affected persons, and diagnostic disclosure. Research issues relate to appropriate informed consent processes, conflict of interests, and research design issues, such as the use of placebos and the use of biological tissues, in the later stages of disease concern about appropriate therapeutic goals and end-of-life care is appropriate.

GENETICS AND THE HEART: THE BASIS FOR INTRODUCING GENETIC TESTING INTO CLINICAL PRACTICE

2020 ◽  
Vol 99 (3) ◽  
pp. 8-15
Author(s):  
N.V. Shcherbakova ◽  
◽  
V.Yu. Voinova ◽  
M.A. Shkolnikova ◽  
◽  
...  
Keyword(s):  
Clinical Practice ◽  
Genetic Testing

scholarly journals Ethical Issues around Death and Withdrawal of Life Support in Neonatal Intensive Care

2021 ◽  
Author(s):  
Stuti Pant
Keyword(s):  
Intensive Care ◽  
Neonatal Intensive Care ◽  
Life Support ◽  
Ethical Issues ◽  
Ethical Dilemmas ◽  
Human Life ◽  
Traumatic Experiences ◽  
National Guidelines ◽  
Brain Injured ◽  
Discharge Against Medical Advice

AbstractAmongst all the traumatic experiences in a human life, death of child is considered the most painful, and has profound and lasting impact on the life of parents. The experience is even more complex when the death occurs within a neonatal intensive care unit, particularly in situations where there have been conflicts associated with decisions regarding the redirection of life-sustaining treatments. In the absence of national guidelines and legal backing, clinicians are faced with a dilemma of whether to prolong life-sustaining therapy even in the most brain-injured infants or allow a discharge against medical advice. Societal customs, vagaries, and lack of bereavement support further complicate the experience for parents belonging to lower socio-economic classes. The present review explores the ethical dilemmas around neonatal death faced by professionals in India, and suggests some ways forward.

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.

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