The law and professional considerations of confidentiality.

In this month's Policy column, Iwan Dowie explores the laws of confidentiality, which forms part of the legal obligation of every community nurse.

Sexual and reproductive health screening and counseling in adolescent and young adult transplant recipients.

Adolescents and young adults with and without chronic illnesses partake in risk-taking behavior. Clinicians in transplant clinics should be aware of the prevalence of risk-taking behavior in their adolescent and young adult solid organ transplant patients in order to provide complete care. Creating an environment where teens and young adults feel comfortable discussing risky behavior is important and includes creating a privacy policy and increasing comfort of the healthcare provider in asking sensitive questions. This review is intended to help the providers in the transplant clinic screen for and counsel about risk-taking behaviors with their adolescent and young adult patients, specifically around sexual and reproductive health.

To Reveal or Not to Reveal, That Is the Wrong Question: Thoughts about Clinical Writing in Psychoanalysis.

This paper plays with the possibilities of writing about psychoanalytic work in different ways with different levels of disclosure about both patient and analyst. Various issues around anonymity, confidentiality, consent and identity are explored, highlighting the many questions that come up. These issues of how to write psychoanalytically are also addressed from the point of view of culture and the sociopolitical gestalt of our time.

What We Do, What We Say, What We Don't Say: Confidentiality In The Publication Of Clinical Writing.

Questions concerning analysts' publication of material from the analyses of their patients have troubled the field of psychoanalysis since its inception. Disguise inevitably distorts the clinical material and is often insufficient to protect the patient from recognition. Asking the patient's consent for publication intrudes upon and alters the analytic process. While analysts have largely reached a consensus about the need for anonymity in published material, there is still considerable debate about the necessity for obtaining patients' consent when using their material for publication. In this paper, I will trace the evolving meanings of disguise, and particularly of consent, in the analytic literature. I will place a particular emphasis upon the differing theoretical belief systems that underlie the analyst's decision to ask consent from her patient or not to do so, and I will argue that, although decisions on asking consent remain a complex matter, such coherent belief systems should play an important part in analysts' decisions regarding consent. I will illustrate my thought processes and some clinical situations with brief examples, and I will conclude with some practical recommendations, with the hope that these will stimulate further discussion in the analytic community.

Ethical Considerations in Pediatric Surgery.

Pediatric surgeons need to learn to give as much importance to the ethical approach as they have been giving to the systemic methodology in their clinical approach all along. The law of the land and the governmental rules also need to be kept in mind before deciding the final solution. They need to always put medical problems in the background of ethical context, reach a few solutions keeping in mind the available resources, and apply the best solution in the interest of their pediatric patients.

Considerations for open-label randomized clinical trials: Design, conduct, and analysis.

Randomization and blinding are regarded as the most important tools to help reduce bias in clinical trial designs. Randomization is used to help guarantee that treatment arms differ systematically only by treatment assignment at baseline, and blinding is used to ensure that differences in endpoint evaluation and clinical decision-making during the trial arise only from the treatment received and not, for example, the expectation or desires of the people involved. However, given that there are times when it is not feasible or ethical to conduct fully blinded trials, we discuss what can be done to improve a trial, including conducting the trial as if it were a fully blinded trial and maintaining confidentiality of ongoing study results. In this article, we review how best to design, conduct, and analyze open-label trials to ensure the highest level of study integrity and the reliability of the study conclusions.

The Costs of Anonymization: Case Study Using Clinical Data.

BACKGROUND: Sharing data from clinical studies can accelerate scientific progress, improve transparency, and increase the potential for innovation and collaboration. However, privacy concerns remain a barrier to data sharing. Certain concerns, such as reidentification risk, can be addressed through the application of anonymization algorithms, whereby data are altered so that it is no longer reasonably related to a person. Yet, such alterations have the potential to influence the data set's statistical properties, such that the privacy-utility trade-off must be considered. This has been studied in theory, but evidence based on real-world individual-level clinical data is rare, and anonymization has not broadly been adopted in clinical practice. OBJECTIVE: The goal of this study is to contribute to a better understanding of anonymization in the real world by comprehensively evaluating the privacy-utility trade-off of differently anonymized data using data and scientific results from the German Chronic Kidney Disease (GCKD) study. METHODS: The GCKD data set extracted for this study consists of 5217 records and 70 variables. A 2-step procedure was followed to determine which variables constituted reidentification risks. To capture a large portion of the risk-utility space, we decided on risk thresholds ranging from 0.02 to 1. The data were then transformed via generalization and suppression, and the anonymization process was varied using a generic and a use case-specific configuration. To assess the utility of the anonymized GCKD data, general-purpose metrics (ie, data granularity and entropy), as well as use case-specific metrics (ie, reproducibility), were applied. Reproducibility was assessed by measuring the overlap of the 95% CI lengths between anonymized and original results. RESULTS: Reproducibility measured by 95% CI overlap was higher than utility obtained from general-purpose metrics. For example, granularity varied between 68.2% and 87.6%, and entropy varied between 25.5% and 46.2%, whereas the average 95% CI overlap was above 90% for all risk thresholds applied. A nonoverlapping 95% CI was detected in 6 estimates across all analyses, but the overwhelming majority of estimates exhibited an overlap over 50%. The use case-specific configuration outperformed the generic one in terms of actual utility (ie, reproducibility) at the same level of privacy. CONCLUSIONS: Our results illustrate the challenges that anonymization faces when aiming to support multiple likely and possibly competing uses, while use case-specific anonymization can provide greater utility. This aspect should be taken into account when evaluating the associated costs of anonymized data and attempting to maintain sufficiently high levels of privacy for anonymized data. TRIAL REGISTRATION: German Clinical Trials Register DRKS00003971; https://drks.de/search/en/trial/DRKS00003971. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1093/ndt/gfr456.

ChatGPT in private practice: The opportunities and pitfalls of novel technology.

OBJECTIVE: This article explores the transformative impact of OpenAI and ChatGPT on Australian medical practitioners, particularly psychiatrists in the private practice setting. It delves into the extensive benefits and limitations associated with integrating ChatGPT into medical practice, summarising current policies and scrutinising medicolegal implications. CONCLUSION: A careful assessment is imperative to determine whether the benefits of AI integration outweigh the associated risks. Practitioners are urged to review AI-generated content to ensure its accuracy, recognising that liability likely resides with them rather than with AI platforms, despite the lack of case law specific to negligence and AI in the Australian context at present. It is important to employ measures that ensure patient confidentiality is not breached and practitioners are encouraged to seek counsel from their professional indemnity insurer. There is considerable potential for future development of specialised AI software tailored specifically for the medical profession, making the use of AI more suitable for the medical field in the Australian legal landscape. Moving forward, it is essential to embrace technology and actively address its challenges rather than dismissing AI integration into medical practice. It is becoming increasingly essential that both the psychiatric community, medical community at large and policy makers develop comprehensive guidelines to fill existing policy gaps and adapt to the evolving landscape of AI technologies in healthcare.

A Matter of Trust: Confidentiality in Therapeutic Relationships during Psychological and Medical Treatment in Children and Adolescents with Mental Disorders.

Background: Confidentiality is a crucial ethical principle in therapy, particularly for children and adolescents, yet their perception of it remains understudied. We aimed to explore minors' perspectives and attributions on confidentiality in psychological and medical treatment. Methods: We interviewed 11 pediatric patients aged 7 to 15 and used reflexive thematic analysis to analyze their responses. Results: Four main themes were extracted from the data: (1) confidentiality and uncertainty regarding what information will be shared with clinicians and parents; (2) consequences of breaching confidentiality, encompassing breaches of confidentiality in the past and their negative effects on interactions with parents and health professionals; (3) exceptions to confidentiality, including understanding the limits of confidentiality; and (4) autonomy and self-determination, reflecting the desire for involvement in medical decisions. Conclusions: Explanations about confidentiality rules and limits, especially with younger children, are crucial. This is particularly important because it is fundamental to promote children's development and self-determination through increasing autonomy, as well as to provide a sense of security and respect through transparent rules. A single educational session on confidentiality at the outset of therapy is insufficient; ongoing conversations are needed to reinforce understanding and promote autonomy.

Disclosure of genetic risk to family members: A qualitative study on healthcare professionals' perceived roles and responsibilities.

This paper presents the perspectives of healthcare professionals regarding their roles and responsibilities in supporting patients with the disclosure of genetic risk to their families. The study involved eight focus groups and two individual interviews with 34 healthcare professionals working in medical genetics services across Portugal. The data were analyzed thematically, resulting in three primary themes: i) informing patients about the risk to relatives; ii) ensuring patient confidentiality; and iii) encouraging family communication. Participants believed it is their responsibility to inform patients about the genetic risk to their relatives, with patients bearing a moral responsibility to convey this information. They explained that the principles of medical confidentiality of the patient take precedence over any direct responsibility to patients' relatives. Treating personal and familial genetic information separately was perceived as challenging to implement and potentially problematic. While most participants reported encouraging patients to inform their relatives, the extent to which they facilitate this communication varies and is also constrained by lack of resources and concerns about complying with legal requirements. Some participants called for clearer national guidelines. These results contribute for ongoing discussions regarding the scope of practice and the roles and responsibilities of healthcare professionals in appropriately cascading pertinent information to at-risk relatives.

Research biobank participants attitudes towards genetic exceptionalism and health record confidentiality.

Understanding attitudes towards genetic exceptionalism and confidentiality is important in guiding policies regarding special protections for genetic/genomic information stored in electronic health records (EHR). The goals of this study were to determine biobank participants' attitudes towards genetic exceptionalism and confidentiality and whether those attitudes are related to their preference for return of genetic results. An online questionnaire was distributed to patients with an EHR and email address who had previously enrolled in the BioMe Biobank program. Most participants responded with similar levels of concern in scenarios involving the use of genetic information and other types of health information, suggesting that participants want similar protections for genetic data as other types of sensitive health information, particularly mental health and family history records. Of the 829 respondents, the majority had genetic exceptionalist views when directly asked, even though their concerns about confidentiality were similar for their genetic information and other health information. There were no differences in genetic exceptionalist views between those who had a documented preference to have genetic results returned and those who did not. Notably, for many participants, their recall of preference did not align with their documented preference. The majority of biobank participants were most anxious about the loss of confidentiality for genetic, mental health, and family history information, indicating that certain types of health information are considered more "sensitive" than others. These findings suggest the importance of assuring people participating in biobank research that the confidentiality of their "sensitive" health information is secured.

Privacidade e confidencialidade dos dados de pessoas idosas frente às tecnologias de monitoramento em saúde / Privacidad y confidencialidad de los datos de las personas mayores frente a las tecnologías de vigilancia de la salud / Privacitat i confidencialitat de les dades de las persones grans davant les tecnologies de vigilància de la salut / Privacy and data confidentiality of older people in the face of health monitoring technologies

O presente artigo discute os avanços e desafios das tecnologias de monitoramento em saúde de pessoas idosas e suas implicações na privacidade e confidencialidade dos dados coletados. Trata-se de estudo exploratório, fundamentado na literatura, com síntese narrativa. O texto contextualiza as demandas decorrentes do envelhecimento populacional e o uso de sensores e de outros dispositivos eletrônicos no monitoramento de atividades diárias de pessoas idosas em ambientes internos e externos. É importante ressaltar que os benefícios oferecidos pelas tecnologias não devem comprometer a privacidade e a confidencialidade dos dados. Para garantir isso, é necessário aprimorar os mecanismos regulatórios, estabelecendo padrões de segurança e princípios éticos para a proteção de dados pessoais, respeitando a privacidade e a confidencialidade dos dados.(AU)

L'article present discuteix els avenços i reptes de les tecnologies de monitoratge en salut de les persones majors i les seves implicacions en la privacitat i confidencialitat de les dades recopilades. Es tracta d'un estudi exploratori, fonamentat en la literatura, amb una síntesi narrativa. El text contextualitza les demandes derivades de l'envelliment de la població i l'ús de sensors i d'altres dispositius electrònics en el monitoratge de les activitats quotidianes de les persones majors en ambients interns i externs. És important destacar que els beneficis oferts per les tecnologies no han de comprometre la privacitat i la confidencialitat de les dades. Per garantir-ho, és necessari millorar els mecanismes reguladors, establint estàndards de seguretat i principis ètics pera la protecció de dades personals, respectant la privacitat i la confidencialitat de les dades.(AU)

El presente artículo discute los avances y desafíos de las tecnologías de monitorización en salud de personas mayores y sus implicaciones en la privacidad y confidencialidad de los datos recolectados. Se trata de un estudio exploratorio, fundamentado en la literatura, con síntesis narrativa. El texto contextualiza las demandas derivadas del envejecimiento poblacional y el uso de sensores y otros dispositivos electrónicos en la monitorización de actividades diarias de personas mayores en ambientes internos y externos. Es importante resaltar que los beneficios ofrecidos por las tecnologías no deben comprometer la privacidad y confidencialidad de los datos. Para garantizar esto, es necesario mejorar los mecanismos reguladores, estableciendo estándares de seguridad y principios éticos para la protección de datos personales, respetando la privacidad y confidencialidad de los dato.(AU)

This article discusses the advances and challenges of health monitoring technologies for elderly individuals and their implications on the privacy and confidentiality of collected data. It is an exploratory study grounded in the literature, with a narrative synthesis. The text contextualizes the demands arising from the aging population and the use of sensors and other electronic devices in monitoring daily activities of elderly people in both indoor and outdoor environments. It is important to emphasize that the benefits offered by these technologies should not compromise the privacy and confidentiality of the data. To ensure this, it is necessary to enhance regulatory mechanisms by establishing security standards and ethical principles for the protection of personal data, while respecting privacy and data confidentiality.(AU)

Contact investigation in multidrug-resistant tuberculosis: ethical challenges.

Contact investigation is an evidence-based intervention of multidrug-resistant tuberculosis (MDR-TB) to protect public health by interrupting the chain of transmission. In pursuit of contact investigation, patients' MDR-TB status has to be disclosed to third parties (to the minimum necessary) for tracing the contacts. Nevertheless, disclosure to third parties often unintentionally leads the MDR-TB patients suffered from social discrimination and stigma. For this reason, patients are less inclined to reveal their MDR-TB status and becomes a significant issue in contact investigation. This issue certainly turns into a negative impact on the public interest. Tension between keeping MDR-TB status confidential and safeguarding public health arises in relation to this issue. Regarding MDR-TB management, patient compliance with treatment and contact investigation are equally important. Patients might fail to comply with anti-TB therapy and be reluctant to seek healthcare due to disclosure concerns. In order to have treatment adherence, MDRTB patients should not live through social discrimination and stigma arising from disclosure and TB team has a duty to support them as a mean of reciprocity. However, implementation of contact investigation as a public health policy can still be challenging even with promising reciprocal support to the patients because MDR-TB patients are living in different contexts and situations. There can be no straight forward settlement but an appropriate justification for each distinct context is needed to strike a balance between individual confidentiality and public interest.

From posts to protection: Ethical considerations regarding forensic psychiatrists and a duty to warn based on social media.

Increasing use of social media in forensic mental health evaluations will lead to new challenges that must be resolved by forensic practitioners and the legal system. One such dilemma is the discovery of information that would typically trigger a legal duty and professional ethics obligation for mental health professionals to breach doctor-patient confidentiality to promote public safety and prevent harm to vulnerable third parties. Although the law and professional organizations offer clear guidance for practitioners in the treatment role, there is currently no clarity from the law or instruction from professional organizations on what mental health professionals should do if they discover such information during a confidential forensic evaluation. For example, a forensic evaluator may find evidence on social media of an evaluee's threats to seriously harm others, abuse of children and the elderly, or severely impaired driving. There are no clear guidelines for how a forensic psychiatrist should respond in these complicated situations. We review the legal concepts and historical evolution of confidentiality, privilege, and mandated reporter duties that forensic practitioners should consider in these legally ambiguous situations. Finally, we discuss ethics frameworks practitioners can implement to determine their most ethical course of action when faced with such dilemmas.

Certificates of confidentiality: privileging research data.

With the Supreme Court's decision in Dobbs, reproductive research now joins other sensitive research topics that present legal risks to research participants, underscoring the role of Certificates in protecting them. Yet, stakeholders question whether Certificates will hold up in court. In this article, we describe the essential arguments supporting Congress's regulation of biomedical research and, thus, Certificates, under its authority to regulate interstate commerce. Our analysis should reassure researchers and Institutional review boards who rely on Certificates to protect the confidentiality of research participants' data. We conclude with recommendations for stakeholders based on our analysis.

Modes of responsibility in disclosing cancer genetic test results to relatives: An analysis of Swiss and Korean narrative data.

OBJECTIVE: We examined how responsibility (the "duty to inform relatives about genetic testing results") is understood and enacted among Swiss and Korean women carrying BRCA1 or BRCA2 pathogenic variants. METHODS: In-depth interviews and/or focus groups with 46 Swiss and 22 Korean carriers were conducted, using an identical interview guide. Data were analyzed inductively and translated into English for cross-country comparisons. RESULTS: We identified five modes of responsibility in both samples: Persuader, Enabler, Relayer, Delayer, and Decliner. The Enabler and Relayer modes were the most common in both countries. They followed the rational imperative of health and norms of competence and self-determination, respectively. The Relayer mode transmitted information without trying to influence relatives' decisions. The Delayer and Decliner modes withheld information, deeming it the best way to safeguard the family during that specific moment of its trajectory. Responsibility to disclose testing results was influenced by culturally diverging conceptions of the family unit and socio-contextual norms. CONCLUSION: Responsibility primarily reflects the imperative of health prevention; findings demonstrate various interpretations, including the sense of family caring achieved through controlled disclosure of genetic information. PRACTICE IMPLICATIONS: Findings offer healthcare providers socio-anthropological insights to assist probands navigate the disclosure of genetic information within their families. TRIAL REGISTRATION NUMBER: NCT04214210 (registered Nov 2, 2020), KCT 0005643 (registered Nov 23, 2020).

Confidentiality and privacy considerations for adolescents receiving contraceptive health services via telemedicine: A narrative review.

Confidential medical care for adolescent patients is essential as they are likely to forgo needed care if privacy cannot be maintained. The use of telemedicine for adolescent health has rapidly expanded due to the COVID-19 pandemic and can increase access to important services like reproductive care; however, it has raised challenges for providers, patients, and their parents/guardians related to confidentiality and privacy. Health care providers are often uncertain about the laws and regulations that govern confidential services including the 21st Century Cures Act. Through a narrative review of studies on confidentiality and telemedicine, this article seeks to summarize the available evidence and provide recommendations on maintaining privacy during virtual encounters and identify current best practices for prescribing contraception via telemedicine.

Confidentiality and privacy considerations for adolescents receiving contraceptive care via telemedicineThe use of telemedicine for adolescent health has rapidly expanded due to the COVID-19 pandemic and can expand access to important services like reproductive care; however, it has raised challenges for providers, patients, and their parents/guardians related to confidentiality and privacy. It is well established by several professional medical societies that contraceptive services should be provided to adolescent patients in a confidential manner; however, health care providers are often uncertain about the laws and regulations that govern confidential services or how to provide these services virtually. Telemedicine is becoming more widespread but will not be an adequate model of care for adolescents as they may avoid necessary medical care if privacy and confidentiality cannot be maintained. This article aims to summarize available literature, provide recommendations on maintaining privacy during virtual patient visits, and identify current best practices for prescribing contraception via telemedicine.

[Ethical and legal aspects of violence against women]. / Aspectos éticos y legales de la violencia sobre la mujer.

Caring for female victims of violence presents health professionals with situations that require careful consideration due to the conflicts raised between the fundamental principles of bioethics. During this process, intermediate courses of action should be adopted in which none of the affected principles is totally compromised, yet always take into account due compliance with legal and deontological regulations. Within these conflicts, the possible impact on the autonomy of the victim must be taken into consideration, conditioned by the relationship of dominance with respect to their aggressor, a fundamental characteristic of gender violence. However, the fact that there is a legal obligation to issue an injury report or to communicate a well-founded suspicion of abuse is not enough to ignore the fact that the person, in this case the victim, must be a participant in the process. As such, the doctor has the obligation to inform his or her patient about this legal requirement, dedicating all the time and attention necessary to ensure that the victim understands the purpose and benefits of complying with this. In any case, and beyond the appropriate adaptation of the professional's conduct to current precepts, the ethical principle of care must be adhered to, by which the best thing the professional can do is to provide the victim with the means to avoid the repetition of new attacks, implementing prevention measures that have their origin in the accurate diagnosis of the situation of violence and in the communication of this to the authorities.