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Purpose of Review In order to inform patients of their genetic risks, access to the medical records and/or stored samples of their relatives is often helpful. We consider some of the obstacles to such access when these relatives are deceased and suggest how they might be navigated. Recent Findings We explore an issue first highlighted in 2004 by Lucassen et al. (Br Med J 328:952–953, 2004) and re-evaluate it in the wake of novel technologies and mainstreaming of genomic medicine. We find that it is still an issue in practice despite professional guidelines advocating access to familial information (Joint Committee on Genomics in Medicine 2019) and that the Human Tissue Act 2004 is often wrongly constructed as a reason to block access. Access is often obstructed by failing to adopt the necessary relational concept of autonomy that applies in genetic medicine as reported by Horton and Lucassen (Curr Genet Med Rep 7:85–91, 2019) and by considering confidentiality to be absolute, even after death. In response to a recent legal case about the confidentiality of genetic test results, and their disclosure to family members (ABC v St George’s Healthcare NHS Trust 2020), Dove et al. (J Med Ethics 45:504–507, 2019) suggested that a duty to consider the interests of genetic relatives could co-exist alongside a duty of confidentiality to a patient. In this way, healthcare professionals can use professional judgement about the relative value of genetic information to family members. This is equally relevant in accessing deceased relatives’ information. A recent systematic review found a high level of acceptability of postmortem use of genetic data for medical research amongst participants and their relatives, and it is reasonable to assume that this acceptability would extend to clinical practice as reported by Bak et al. (Eur J Hum Genet 28:403–416, 2020). Summary Within clinical practice, access to medical records/samples of deceased relatives is often obstructed unnecessarily, potentially resulting in harm to the living relatives seeking advice. Consent to such access is important but need not be the bureaucratic hurdle that is often imposed.

Poverty in childhood is associated with an increased risk of being marginalised and socially excluded, which is also the case in the Swedish welfare state. Poor parents often strive for their children to fit in among same‐aged children, which is difficult for the poorest to accomplish. As the last resort for the poor, the welfare state offers the opportunity to apply for financial aid, but applications may be rejected. Parents can then appeal the rejections to an administrative court. In these decisions, the UN Convention on the Rights of the Child could be applied or referred to. The convention has been incorporated into Swedish law since 2020. This article is grounded in childhood sociology and aims to show how poor children, their needs, and rights are processed in the legal system, which sets the framework for the children’s access to material conditions needed for inclusion in a welfare state such as Sweden. The presentation is based on a qualitative content analysis of administrative court records concerning financial aid appeals. The results show that the appeal process confirms the adult orientation of financial aid and that a child rights perspective is, with few exceptions, missing in these records. When children are mentioned, a care perspective dominates and their right to participation is neglected.

Background A new dashboard, the 360ºCHILD-profile, was developed to adopt personalized health care within preventive child health care. On this profile, holistic health data are visualized in a single image to provide parents, adolescents, and caregivers direct access to a manageable résumé of a child’s medical record. Theoretical ordering, conforming to “International Classification of Functioning, Disability and Health for Children and Youth”, guides clinical reasoning toward the biopsychosocial concept of health. It is yet unknown if and how this promising tool functions in practice, and a variety of feasibility questions must be addressed. Objective This paper describes the design and methods of a feasibility randomized controlled trial (RCT), with the aim of evaluating the RCT’s feasibility (recruitment, response, measure completion, and intervention allocation) and 360ºCHILD-profile’s feasibility (usability and potential effectiveness). Methods A pragmatic mixed methods study design was chosen, starting with an RCT to measure feasibility and health literacy in 2 parallel groups (1:1). Qualitative research will then be used to understand and explain quantitative findings and to explore the stakeholders' perspectives on the potential of the 360ºCHILD-profile. Participants will include child health care professionals (n≥30), parents (n≥30), and caregivers (n≥10) of children who experience developmental problems (age 0-16 years). Children will only be able to participate if they are older than 11 years (adolescents, n≥10). The 2 groups included in the study will receive standard care. The experimental group will additionally receive personalized 360ºCHILD-profiles. Results After an intervention period of 6 months, quantitative outcomes will be measured, analyzed (descriptive feasibility statistics and preliminary between-group differences) and used to purposively sample for semistructured interviews. Conclusions Study results will provide knowledge for building theory on the 360ºCHILD-profile and designing future (effect) studies. Trial Registration Netherlands Trial Register NTR6909; https://www.trialregister.nl/trial/6731 International Registered Report Identifier (IRRID) DERR1-10.2196/21942

This study presents an analysis of the aspects of the management, preservation, and access to the records of the Brazilian ministries, with emphasis on records produced in digital media. A survey of data was carried out in twenty-two Brazilian ministries on the following topics: records management policy; existence of a Standing Document Evaluation Committee; sending of deletion of records to the National Archives; computerized system for the production of digital records; existence of a digital preservation policy; and, application of archival platform of access and diffusion of records. It was found that most ministries do not have a record management policy, and although many have a permanent record evaluation committee, there is no effective deletion of records by sending records deletion of records to the National Archives. The use of computerized systems for the production and processing of digital records has been identified, but, on the other hand, the elements of digital records management are attended by a minimal portion of the ministries, representing a perspective that is not conducive to the management, preservation and access to digital records. Este estudo apresenta uma análise dos aspectos da gestão, preservação e acesso aos documentos arquivísticos dos ministérios brasileiros, com destaque para os documentos arquivísticos produzidos em meio digital. Realizou-se um levantamento de dados em vinte e dois ministérios brasileiros sobre os seguintes temas: política de gestão de documentos arquivísticos; existência de Comissão Permanente de Avaliação de Documentos; envio de listagens de eliminação de documentos ao Arquivo Nacional; sistema informatizado voltado à produção de documentos arquivísticos digitais; existência de política de preservação digital e aplicação de plataforma arquivística de acesso e difusão de documentos. Constatou-se que a maioria dos ministérios não possui política de gestão de documentos, e embora muitos possuam Comissão Permanente de Avaliação de Documentos instituída, não se constata uma efetiva eliminação de documentos por meio do envio de listagens de eliminação de documentos ao Arquivo Nacional. Identificou-se o uso de sistemas informatizados para produção e tramitação de documentos digitais, mas, em contrapartida, os elementos da gestão arquivística de documentos digitais são atendidos por uma parcela mínima dos ministérios, representando um cenário pouco propício à gestão, preservação e acesso aos documentos arquivísticos.

This paper briefly outlines the history of the medical record and the factors contributing to the adoption of computerized records in primary care in the United Kingdom. It discusses how both paper-based and electronic health records have traditionally been used in the past and goes on to examine how enabling patients to access their own primary care record online is changing the form and function of the patient record. In addition, it looks at the evidence for the benefits of Web-based access and discusses some of the challenges faced in this transition. Finally, some suggestions are made regarding the future of the patient record and research questions that need to be addressed to help deepen our understanding of how they can be used more beneficially by both patients and clinicians.

This paper briefly outlines the history of the medical record and the factors contributing to the adoption of computerized records in primary care in the United Kingdom. It discusses how both paper-based and electronic health records have traditionally been used in the past and goes on to examine how enabling patients to access their own primary care record online is changing the form and function of the patient record. In addition, it looks at the evidence for the benefits of Web-based access and discusses some of the challenges faced in this transition. Finally, some suggestions are made regarding the future of the patient record and research questions that need to be addressed to help deepen our understanding of how they can be used more beneficially by both patients and clinicians.

Zusammenfassung Der Aufsatz versteht sich als Beitrag zur methodischen Diskussion uber die Grenzen der Interpretationsabsicherung in biographischer Fallrekonstruktion und beschaftigt sich mit der Frage, welchen Erkenntniswert die verwalteten Biographien fur die Biographieforschung haben. Werden Stasi-Unterlagen in ihrem Produktions- und Nutzungskontext betrachtet, lasst sich sofort erkennen, dass sie keine passiven Abschriften von Lebensereignissen sind. Vielmehr sind sie insofern aktive Leistungen ihrer Verfasser, als sie zu dem der Institution eigenen Zweck entstanden sind, Misstrauen zu generieren und deviante Lebenslaufe zu konstruieren. Anhand von kontrastierenden Formaten wie einem Eroffnungsbericht zu einer Akte und einem Transkript eines abgehorten Telefonates werden die Besonderheiten von Stasi-Akten als Quellen fur die Biographieforschung herausgearbeitet. Als Resultat lasst sich erkennen, dass amtliche Dokumente zwar eine Version des biographischen Geschehens liefern, aber in erster Linie als Losung fur relevante institutionelle Aufgaben dienen. ----- Bibliographie: Galanova, Olga: Das Leben unter Verdacht. Unterlagen des Ministeriums fur Staatssicherheit als Quelle „devianter Biographien“, BIOS, 1-2016, S. 117-130. https://doi.org/10.3224/bios.v29i1.07

The findings from the study suggest that international pressure for more effective Right to Information (RTI) implementation only goes so far. The development of RTI laws with the encouragement, assistance, or insistence of the international community was a prominent theme throughout the case studies, particularly for EU countries during their accession process. But implementation is a less straightforward task, with many interlocking, moving parts, and international support comes in ad hoc fashion as the process unfolds. A strong implication from these findings is that a national coordinating strategy may be valuable for implementation. This kind of strategy document should take the interdependence of the drivers of effectiveness into account when drafting policies and rules for practice, and can serve as a guiding document when deciding on foreign funding priorities.

"The Berlin Document Center (BDC) - today a part of Germany's Federal Archives (Bundesarchiv) - with its holdings of Nazi files and documents has been and still is a central point of public interest. As a result of the military defeat of Germany, the BDC was founded in July 1945 by the American Armed Forces in Berlin-Zehlendorf as a collecting point for NS state and party records and documents of varied origin which had been confiscated by the American troops during the last months and weeks of World War II. The center piece of these collections were the NSDAP membership file cards of almost 11 million party members transmitted from Munich to Berlin in late 1945. Additionally biographical data and person-related files of various Nazi organizations were kept at the BDC under American administration. In 1994, the BDC holdings were transferred to the Bundesarchiv and German legislature provided rules for public access to the Nazi files for the first time. About 10.000 requests with regard to the former BDC files still reach the Bundesarchiv every year. The recent disclosure of several German celebrities' nominal membership in the NSDAP has re-stirred a public and scientific debate over NSDAP memberships, the circumstances of enlistment, and the NSDAP membership files themselves. In this article, the subject is discussed from a BDC and Federal Archives insider's perspective." (author's abstract)