The recent pandemic crisis has highlighted the importance of the availability and management of health data to respond quickly and effectively to health emergencies, while respecting the fundamental rights of every in...The recent pandemic crisis has highlighted the importance of the availability and management of health data to respond quickly and effectively to health emergencies, while respecting the fundamental rights of every individual. In this context, it is essential to find a balance between the protection of privacy and the safeguarding of public health, using tools that guarantee transparency and consent to the processing of data by the population. This work, starting from a pilot investigation conducted in the Polyclinic of Bari as part of the Horizon Europe Seeds project entitled “Multidisciplinary analysis of technological tracing models of contagion: the protection of rights in the management of health data”, has the objective of promoting greater patient awareness regarding the processing of their health data and the protection of privacy. The methodology used the PHICAT (Personal Health Information Competence Assessment Tool) as a tool and, through the administration of a questionnaire, the aim was to evaluate the patients’ ability to express their consent to the release and processing of health data. The results that emerged were analyzed in relation to the 4 domains in which the process is divided which allows evaluating the patients’ ability to express a conscious choice and, also, in relation to the socio-demographic and clinical characteristics of the patients themselves. This study can contribute to understanding patients’ ability to give their consent and improve information regarding the management of health data by increasing confidence in granting the use of their data for research and clinical management.展开更多
The publisher would like to draw the reader's attention to the following errors.Informed consents were not included in the published version of the following articles that appeared in previous issues of Grain&...The publisher would like to draw the reader's attention to the following errors.Informed consents were not included in the published version of the following articles that appeared in previous issues of Grain&Oil Science and Technology.The authors were contacted after publication to request informed consents for the following articles.The appropriate informed consents,provided by the authors,are included below.展开更多
Recent advancements in next generation sequencing have allowed for genetic information become more readily available in the clinical setting for those affected by cancer and by treating clinicians.Given the lack of ac...Recent advancements in next generation sequencing have allowed for genetic information become more readily available in the clinical setting for those affected by cancer and by treating clinicians.Given the lack of access to geneticists,medical oncologists and other treating physicians have begun ordering and interpreting genetic tests for individuals with cancer through the process of"mainstreaming".While this process has allowed for quicker access to genetic tests,the process of"mainstreaming"has also brought several challenges including the dissemination of variants of unknown significance results,ordering of appropriate tests,and accurate interpretation of genetic results with appropriate followup testing and interventions.In this editorial,we seek to explore the process of informed consent of individuals before obtaining genetic testing and offer potential solutions to optimize the informed consent process including categorization of results as well as a layered consent model.展开更多
In the criminological system, passive euthanasia is an act that meets the constitutive elements. We should discard the traditional view of distinguishing between acts and omissions, but use genuine consent or presumpt...In the criminological system, passive euthanasia is an act that meets the constitutive elements. We should discard the traditional view of distinguishing between acts and omissions, but use genuine consent or presumptive consent under the patient’s right to self-determination as the basis for its justification. In general, the patient’s genuine consent takes precedence, but in case of the unavail-ability of the patient’s genuine consent, his or her presumptive consent should be applied as a substitute. The judgment of presumptive con-sent should follow the subsequence, with the living will of the patient applied first and then the substitute decision-making. If the patient’s personal will cannot be inferred after exhausting all available possi-bilities, the principle of prioritizing the interests of life should prevail, and the ongoing life-sustaining medical care should not be interrupted or terminated.展开更多
This article explores the ethical considerations surrounding the reporting of offlabel and experimental treatments in medical case reports,with a focus on fields such as oncology,psychiatry,and pediatrics.It emphasize...This article explores the ethical considerations surrounding the reporting of offlabel and experimental treatments in medical case reports,with a focus on fields such as oncology,psychiatry,and pediatrics.It emphasizes the balance between innovation and evidence-based medicine,highlighting the critical role of case reports in disseminating clinical experiences and advancing medical knowledge.The discussion delves into the ethical framework guiding case reporting,including principles of patient autonomy,informed consent,non-maleficence,beneficence,justice,and transparency.Challenges such as negative outcome reporting,commercial interests,and the balance between innovation and caution are examined.Recommendations for ethical vigilance,the development of comprehensive guidelines,and the role of regulatory bodies are proposed to ensure patient safety and uphold scientific integrity.The article concludes by underscoring the importance of a collaborative effort among clinicians,researchers,ethicists,and regulatory bodies to foster the responsible advancement of medical science while adhering to the highest ethical standards.展开更多
文摘The recent pandemic crisis has highlighted the importance of the availability and management of health data to respond quickly and effectively to health emergencies, while respecting the fundamental rights of every individual. In this context, it is essential to find a balance between the protection of privacy and the safeguarding of public health, using tools that guarantee transparency and consent to the processing of data by the population. This work, starting from a pilot investigation conducted in the Polyclinic of Bari as part of the Horizon Europe Seeds project entitled “Multidisciplinary analysis of technological tracing models of contagion: the protection of rights in the management of health data”, has the objective of promoting greater patient awareness regarding the processing of their health data and the protection of privacy. The methodology used the PHICAT (Personal Health Information Competence Assessment Tool) as a tool and, through the administration of a questionnaire, the aim was to evaluate the patients’ ability to express their consent to the release and processing of health data. The results that emerged were analyzed in relation to the 4 domains in which the process is divided which allows evaluating the patients’ ability to express a conscious choice and, also, in relation to the socio-demographic and clinical characteristics of the patients themselves. This study can contribute to understanding patients’ ability to give their consent and improve information regarding the management of health data by increasing confidence in granting the use of their data for research and clinical management.
文摘The publisher would like to draw the reader's attention to the following errors.Informed consents were not included in the published version of the following articles that appeared in previous issues of Grain&Oil Science and Technology.The authors were contacted after publication to request informed consents for the following articles.The appropriate informed consents,provided by the authors,are included below.
文摘Recent advancements in next generation sequencing have allowed for genetic information become more readily available in the clinical setting for those affected by cancer and by treating clinicians.Given the lack of access to geneticists,medical oncologists and other treating physicians have begun ordering and interpreting genetic tests for individuals with cancer through the process of"mainstreaming".While this process has allowed for quicker access to genetic tests,the process of"mainstreaming"has also brought several challenges including the dissemination of variants of unknown significance results,ordering of appropriate tests,and accurate interpretation of genetic results with appropriate followup testing and interventions.In this editorial,we seek to explore the process of informed consent of individuals before obtaining genetic testing and offer potential solutions to optimize the informed consent process including categorization of results as well as a layered consent model.
基金the Beijing Social Science Foundation Project (Project Number 20221BS0009).
文摘In the criminological system, passive euthanasia is an act that meets the constitutive elements. We should discard the traditional view of distinguishing between acts and omissions, but use genuine consent or presumptive consent under the patient’s right to self-determination as the basis for its justification. In general, the patient’s genuine consent takes precedence, but in case of the unavail-ability of the patient’s genuine consent, his or her presumptive consent should be applied as a substitute. The judgment of presumptive con-sent should follow the subsequence, with the living will of the patient applied first and then the substitute decision-making. If the patient’s personal will cannot be inferred after exhausting all available possi-bilities, the principle of prioritizing the interests of life should prevail, and the ongoing life-sustaining medical care should not be interrupted or terminated.
文摘This article explores the ethical considerations surrounding the reporting of offlabel and experimental treatments in medical case reports,with a focus on fields such as oncology,psychiatry,and pediatrics.It emphasizes the balance between innovation and evidence-based medicine,highlighting the critical role of case reports in disseminating clinical experiences and advancing medical knowledge.The discussion delves into the ethical framework guiding case reporting,including principles of patient autonomy,informed consent,non-maleficence,beneficence,justice,and transparency.Challenges such as negative outcome reporting,commercial interests,and the balance between innovation and caution are examined.Recommendations for ethical vigilance,the development of comprehensive guidelines,and the role of regulatory bodies are proposed to ensure patient safety and uphold scientific integrity.The article concludes by underscoring the importance of a collaborative effort among clinicians,researchers,ethicists,and regulatory bodies to foster the responsible advancement of medical science while adhering to the highest ethical standards.
