Familial disclosure by genetic healthcare professionals: a useful but sparingly used legal provision in France

2019 ◽  
Vol 45 (12) ◽  
pp. 811-816 ◽  
Author(s):  
Benjamin Derbez ◽  
Antoine de Pauw ◽  
Dominique Stoppa-Lyonnet ◽  
Frédéric Galactéros ◽  
Sandrine de Montgolfier
Keyword(s):  
Ethical Issue ◽  
Genetic Information ◽  
Healthcare Professionals ◽  
Relevant Information ◽  
Genetic Mutation ◽  
Medical Genetics ◽  
Legal Provision ◽  
Legal Provisions

Familial disclosure of genetic information is an important, long-standing ethical issue that still gives rise to much debate. In France, recent legislation has created an innovative and unprecedented procedure that allows healthcare professionals (HCPs), under certain conditions, to disclose relevant information to relatives of a person carrying a deleterious genetic mutation. This article will analyse how HCPs in two medical genetics clinics have reacted to these new legal provisions and show how their reticence to inform the patients’ relatives on their behalf leads them to use this option sparingly.

Public Experiences, Knowledge and Expectations about Medical Genetics and the Use of Genetic Information

2004 ◽  
Vol 7 (1) ◽  
pp. 33-43 ◽  
Author(s):  
Lidewij Henneman ◽  
Danielle R.M. Timmermans ◽  
Gerrit van der Wal
Keyword(s):  
Genetic Information ◽  
Medical Genetics

scholarly journals ṢULḤ (MEDIATION) IN THE STATE OF SELANGOR: AN ANALYSIS OF LEGAL PROVISION AND ITS APPLICATION

2012 ◽  
Vol 18 (2) ◽  
Author(s):  
Sa’odah Binti Ahmad ◽  
Nora Binti Abdul Hak
Keyword(s):  
Family Law ◽  
Civil Procedure ◽  
The State ◽  
Legal Provision ◽  
Legal Provisions ◽  
Islamic Family Law

The first part of the paper seeks to examine the relevant legal provisions of ṣulḥ in the State of Selangor Darul Ehsan. Thus, the provisions of ṣulḥ as provided for under the Islamic Family Law Enactment 2003 will be discussed and analysed. Other provisions under the Administration of Islamic Religious Enactment 2003, the Syariah Court Civil Procedure Enactment 2003 and the Civil procedure (ṣulḥ) Rules 2001 will also be examined to study the procedures and guidelines in conducting Majlis ṣulḥ. The qualification of ṣulḥ officer will be briefly discussed in the last part of the paper. The paper concludes by commending the initiative that has been taken by the Department of Syariah Judiciary of Selangor in introducing ṣulḥ which has been proven to be very effective in reducing excess cases in the State Syariah Courts.

scholarly journals ENSURING COMPENSATION FOR DAMAGE CAUSED BY CRIMINAL OFFENSES AS A RESULT OF SCAMMING ACTIVITIES IN THE FIELD OF TOURISM

2020 ◽  
pp. 369-376
Author(s):  
Г. В. Захарова
Keyword(s):  
Relevant Information ◽  
Legal Regulation ◽  
The State ◽  
Criminal Proceedings ◽  
Legal Provisions ◽  
Criminal Offenses ◽  
Domestic Legislation ◽  
Legislative Proposals ◽  
Compensation For Damage ◽  
Legal Compensation

The purpose of the article is to study the legal regulation and law enforcement practices on compensation for victims of criminal proceedings due to fraud in the field of tourism, identify problematic aspects in this direction, and make regulatory legislative proposals to improve legal compensation for victims of criminal proceedings. The article considers some issues related to compensation for damage caused by a criminal offense as a result of fraudulent acts in the field of tourism. The issues of legal regulation under domestic legislation and the legislation of individual European countries on compensation by the state for damage caused to victims are analyzed. It is emphasized that the priority for victims of fraudulent criminal acts is the requirement of compensation for damage, as well as the issue of compensation, compensation for such damage. It turns out that the voluntary compensation of victims by criminals directly depends on the quality and totality of the indictments collected against them, which fully expose their criminal activities. Meanwhile, the legislator did not pay enough attention to the possibility of voluntary compensation for damage to the person who caused it, as well as the benefits of voluntary compensation for damage. The legal provisions to be settled on this issue are indicated. Emphasis is placed on the need for timely pre-trial investigation of relevant traditional measures aimed at finding and locating, staying, both movable and immovable property, securities, jewelry, etc., which may be seized, in order to ensure compensation to the victim. damage. Emphasis is placed on the effectiveness and expediency of using the capabilities of IT technologies of relevant information resources, Internet services, and monitoring of websites that contain information that can help find as soon as possible the property of criminals who can be seized. At the same time, it is noted that the creation and proper functioning of the state fund for compensation to victims of crimes will be an additional constitutional guarantee that will only strengthen human security and increase the overall authority of the state.

scholarly journals Communication and access to information in assessing the quality of multiprofessional care of patients

2010 ◽  
Vol 8 (3) ◽  
pp. 303-307
Author(s):  
Leny Vieira Cavalheiro ◽  
Paola Bruno de Araújo Andreoli ◽  
Nadia Sueli de Medeiros ◽  
Telma de Almeida Busch Mendes ◽  
Roselaine Oliveira ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Healthcare Professionals ◽  
Clinical Information ◽  
Relevant Information ◽  
Cross Sectional Study ◽  
Model Group ◽  
Cross Sectional ◽  
Multiprofessional Team ◽  
Under Performing

ABSTRACT Objective: To assess the quality of a multiprofessional healthcare model for in-hospital patients by means of two performance indicators (communication and knowledge about the case). Methods: A cross-sectional study assessed the knowledge that professionals had about the clinical information of patients and the use of communication strategies by the team. Healthcare professionals were interviewed during their work period. Seven occupational categories were interviewed. A total of 199 medical charts were randomly selected for interviews, and 312 professionals of different categories were interviewed. The sample comprised mostly nurses and physical therapists in the charts that were interviewed. Results: There were no statistically significant differences between the expected performing model group and the under-performing model group for sex, location and job. In the under-performing model group, a larger number of professionals correlated with less knowledge. Communication was improved when nurses had the relevant information about interdisciplinary care (97.4%), appropriate use of the Plan of Care form (97.0%), and formalized discussions with physicians (88.2%). In the expected performing model group, it was observed that the higher the number of healthcare professionals involved, the higher the communication levels. Conclusions: This model of care based on case knowledge and multiprofessional team communication performance indices allowed to assess quality of care. This assessment is measurable and there is the possibility of establishing the quality of care delivered.

scholarly journals Hospital and nursing home patients’ experiences with delirium assessments: A qualitative content analysis

2019 ◽  
Vol 40 (1) ◽  
pp. 52-58
Author(s):  
Helle Svenningsen ◽  
Dorthe Sørensen
Keyword(s):  
Content Analysis ◽  
Nursing Home ◽  
Qualitative Method ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
Relevant Information ◽  
Delirium Assessment ◽  
Face To Face ◽  
Nursing Home Patients

To explore hospital and nursing home patients’ experiences with delirium assessments and better understand their attitudes, we used a qualitative method to summarise, in everyday terms, specific events observed by researchers and experienced by patients. We performed participant observations of delirium assessments of eight patients and conducted individual semi-structured face-to-face interviews with seven other patients. We carried out content analysis using an inductive approach. Our findings indicate that patients approached delirium assessment with initial scepticism due to a lack of knowledge. Their scepticism changed to complete acceptance after the assessment’s purpose was explained. However, some patients gave up on the assessment due to cognitive challenges, lack of energy, fatigue, or language barriers. Patients appreciated that professionals were interested in their mental and physical well-being. Despite initial scepticism, the patients found the delirium assessment valuable when they better understood its purpose. Thus, healthcare professionals should provide patients with relevant information about delirium assessments.

scholarly journals Clinical and Genetic Review of Hereditary Acral Reticulate Pigmentary Disorders

2017 ◽  
Vol 2017 ◽  
pp. 1-11 ◽  
Author(s):  
H. Alshaikh ◽  
F. Alsaif ◽  
S. Aldukhi
Keyword(s):  
Genetic Analysis ◽  
Genetic Information ◽  
Clinical Presentation ◽  
Genetic Mutation ◽  
Pigmentary Disorders ◽  
Pigmentary Change ◽  
Hereditary Disorders ◽  
Dyschromatosis Symmetrica Hereditaria ◽  
Hereditary Conditions ◽  
Pigmentation Disorders

Reticulated pigmentation is a unique pigmentary change caused by a heterogeneous group of hereditary and acquired disorders. This pigmentation is characterized by a mottled appearance, with lesions that vary in size and pigmentary content. This review discusses the hereditary group of the reticulated pigmentation disorders, such as dyschromatosis symmetrica hereditaria, dyschromatosis universalis hereditaria, and reticulate acropigmentation of Kitamura. The clinical presentation and histopathological features often overlap, making diagnosis difficult. However, each of these hereditary conditions possesses a unique genetic mutation, and genetic analysis is thus more useful in the diagnosis of these conditions. This article delivers an update regarding the clinical features, detailed histopathological description, and genetic information concerning hereditary reticulate pigmentary disorders and aims to provide useful background for use by clinical dermatologists and histopathologists when approaching this group of hereditary disorders.

scholarly journals Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations

2020 ◽  
Author(s):  
Francine A. van den Driessen Mareeuw ◽  
Antonia M.W. Coppus ◽  
Diana M.J. Delnoij ◽  
Esther de Vries
Keyword(s):  
Down Syndrome ◽  
Quality Indicators ◽  
Delphi Study ◽  
Healthcare Professionals ◽  
Relevant Information ◽  
Quality Of Healthcare ◽  
Measurement Instruments ◽  
Patient Organisations ◽  
Previous Round ◽  
Insight Into

Abstract Background: Insight into quality of healthcare for people with Down Syndrome (DS) is limited. Quality indicators (QIs) can provide this insight. This study aims to find consensus among participants regarding QIs for healthcare for people with DS.Methods: We conducted a four-round Delphi study, in which 33 healthcare professionals involved in healthcare for people with DS and two patient organisations’ representatives in the Netherlands participated. Median and 75-percentiles were used to determine consensus among the answers on 5-point Likert-scales. In each round, participants received an overview of participants’ answers from the previous round.Results: Participants agreed (consensus was achieved) that a QI-set should provide insight into available healthcare, enable healthcare improvements, and cover a large diversity of quality domains and healthcare disciplines. However, the number of QIs in the set should be limited in order to prevent registration burden. Participants were concerned that QIs would make quality information about individual healthcare professionals publicly available, which would induce judgement of healthcare professionals and harm quality, instead of improving it. Conclusions: We unravelled the complexity of capturing healthcare for people with DS in a QI-set. Patients’ rights to relevant information have to be carefully balanced against providers’ entitlement to a safe environment in which they can learn and improve. A QI-set should be tailored to different healthcare disciplines and information systems, and measurement instruments should be suitable for collecting information from people with DS. Results from this study and two preceding studies, will form the basis for the further development of a QI-set.

scholarly journals COVID-19 is a New Challenge for Dental Practitioners: Advice on Patients’ Management from Prevention of Cross Infections to Telemedicine

2020 ◽  
Vol 14 (1) ◽  
pp. 298-304 ◽  
Author(s):  
Amerigo Giudice ◽  
Francesco Bennardo ◽  
Alessandro Antonelli ◽  
Selene Barone ◽  
Leonzio Fortunato
Keyword(s):  
Healthcare Professionals ◽  
Recent Literature ◽  
Scientific Information ◽  
Relevant Information ◽  
Control Measures ◽  
Infection Control Measures ◽  
Dental Procedures ◽  
Dental Office ◽  
Dental Practitioners ◽  
Essential Knowledge

Background: The COVID-19, originated in China in December 2019, has spread worldwide pandemically. Infection control measures are especially needed for healthcare professionals who meet potentially infected patients. Objective: The authors aimed to provide general knowledge about COVID-19 disease and indications for the management of emergency dental procedures based on recent literature and experience gained. Methods: A literature search was performed to identify scientific information on COVID-19 and prevention of cross infection appropriate for the practice of dentistry. Results: The authors provided relevant information about SARS-CoV-2 virus, COVID-19 disease, and prevention of cross infections in the dental office. Furthermore, the authors described their experience and highlighted the potential of telemedicine. Conclusion: This article, based on relevant researches, guidelines and Authors’ experience in a COVID-19 Hospital, introduces essential knowledge about COVID-19 and transmission routes and provides recommended management protocols for dental practitioners.

GENETICS: A MODIFICATION IN DENTISTRY

2021 ◽  
pp. 10-11
Author(s):  
Charu Gandhi ◽  
Sadhvi Gupta
Keyword(s):  
Genetic Information ◽  
Human Growth ◽  
Medical Genetics ◽  
Human Diseases ◽  
Diagnosis And Treatment ◽  
Oral Diseases ◽  
Technological Advances ◽  
Developmental Disturbances ◽  
Potential Applications ◽  
Private And Public

Genetics is a branch of biology which can be dened as the study of genes and heredity. Genetics when seen in relation to oral health can show various manifestations ranging from developmental disturbances to precancerous and cancerous lesions. Signicant advances in research methods and newly emerging partnerships between private and public sector interests are creating new possibilities for utilization of genetic information for the diagnosis and treatment of human diseases. The availability and application of genetic information to the understanding of normal and abnormal human growth and development are fundamentally changing the way we approach the study of human diseases. As a result, the issues and principles of medical genetics are coming to bear across all disciplines of health care. In this review, we discuss some of the potential applications of human molecular genetics for the diagnosis and treatment of oral diseases. This discussion is presented in the context of the ongoing technological advances and conceptual changes that are occurring in the eld of medical genetics.

Disclosure of genetic information within families: a case report

2008 ◽  
Vol 3 (1) ◽  
pp. 7-10
Author(s):  
G C Crawford ◽  
A M Lucassen
Keyword(s):  
Case Report ◽  
Genetic Information ◽  
Family Members ◽  
Relevant Information ◽  
Major Surgery ◽  
Ongoing Debate ◽  
The Family ◽  
Moral Duties ◽  
Test Result

There has been much discussion about what, if any, legal and moral duties professionals have to disclose relevant genetic information to the family members of someone with an identified disease predisposing mutation. Here, we present a case report where dissemination of such a genetic test result did not take place within a family. In contrast to previous literature, there appeared to be no deliberate withholding of information, instead distant relatives were unable to communicate relevant information appropriately. When communication was facilitated through the follow-up of a chance remark, the patient was able to avoid planned major surgery, with its attendant morbidity, and her high anxiety levels were much reduced. We believe this case highlights the need for an ongoing debate on how genetic services can best support patients and their families with disclosing relevant genetic information to other family members.

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