Expanding citizen engagement in the secondary use of health data: an opportunity for national health data access bodies to realise the intentions of the European health data space.

The European Health Data Space (EHDS) aims to make the primary use of health data for healthcare provision more continuous, effective, and (cost) efficient. Moreover, it pursues to facilitate the secondary use of health data for purposes such as research, innovation, and policy making. In the context of secondary use, the EHDS legislative proposal (published on 3 May 2022) argues that Member States should develop Health Data Access Bodies (HDABs) whose responsibilities include facilitating the secondary use of health data, issuing data permits, and implementing high levels of accountability and security.

Opportunities for a population-based cohort in Belgium.

Population-based cohorts allow providing answers to a wide range of policy-relevant research questions. In Belgium, existing cohort-like initiatives are limited by their focus on specific population groups or specific topics, or they lack a true longitudinal design. Since 2016, consultations and deliberative processes have been set up to explore the opportunities for a population-based cohort in Belgium.

A qualitative study among patients with an inherited retinal disease on the meaning of genomic unsolicited findings.

Exome-based testing for genetic diseases can reveal unsolicited findings (UFs), i.e. predispositions for diseases that exceed the diagnostic question.

The Belgian DNA Debate: An Online Deliberative Platform on the Ethical, Legal, and Social Issues of Genomics.

Introduction: Genomics is increasingly being implemented in the society. To fully realise this implementation, citizens should be consulted about their perspectives on genomics and its associated ethical, legal, and social issues (ELSI) to enable them to co-create with experts a society-supported framework in genomics.

Methods: A Belgian online DNA debate was organised, where 1,127 citizens contributed to its deliberative platform.

Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study.

Background: Incidental findings (IFs) and secondary findings (SFs), being results that are unrelated to the diagnostic question, are the subject of an important debate in the practice of clinical genomic medicine. Arguments for reporting these results or not doing so typically relate to the principles of autonomy, non-maleficence and beneficence. However, these principles frequently conflict and are insufficient by themselves to come to a conclusion.

Primary Care Physicians' Perspectives on the Ethical Impact of the Electronic Medical Record.

Objective: The aim of this study is to explore whether specific ethical questions arise with the use of a shared electronic health record (EHR) system, based on the daily experience of primary care physicians (PCPs).

Methods: In this qualitative research project, we conducted 14 in-depth semistructured interviews with PCPs in a tertiary hospital setting.

Results: We identified 4 themes: 1) PCPs describe the EHR as a medicine with side effects, for which they provide suggestions for improvements; 2) A shared record raises ethical questions related to autonomy and trust; 3) Although use of the EHR often disturbs rapport with the patient, it can also support the patient-doctor interaction when it becomes an active part of the conversation; 4) A shared EHR may cause health care providers (and their relatives) to avoid seeking help for sensitive issues.

Criteria for reporting incidental findings in clinical exome sequencing - a focus group study on professional practices and perspectives in Belgian genetic centres.

Background: Incidental and secondary findings (IFs and SFs) are subject to ongoing discussion as potential consequences of clinical exome sequencing (ES). International policy documents vary on the reporting of these findings. Discussion points include the practice of unintentionally identified IFs versus deliberately pursued SFs, patient opt-out possibilities and the spectrum of reportable findings.

Incidental or secondary findings: an integrative and patient-inclusive approach to the current debate.

Incidental or secondary findings (ISFs) in whole exome or whole genome sequencing have been widely debated in recent literature. The American College of Medical Genetics and Genomics' recommendations on diagnostic ISFs have strongly catalyzed the discussion, resulting in worldwide reactions and a variety of international guidelines. This article will outline how propositions on levels of terminology, policy, and underlying values are still internationally criticized and adjusted.

The Sexual Adjustment Process of Cancer Patients and Their Partners: A Qualitative Evidence Synthesis.

When confronted with cancer, a prominent challenge for patients and their partners is their changed sexual relationship. An empirically based theoretical model of the sexual adaptation process during cancer might be helpful in guiding the development of adequate interventions for couples who struggle with their sexual relationship. Therefore, the purpose of this study was to synthesize evidence from primary qualitative research studies and to arrive at a detailed description of the process of sexual adjustment during cancer.

Acting Independently While Living Alone: The Strategies and Struggles of Cancer Patients.

Cancer patients who live alone place specific importance on acting independently during treatment. We want to describe what it means to act independently and which strategies patients use to continue to act independently. We used a qualitative design, based on grounded theory.

Informal support needs of cancer patients who are living alone: a qualitative insight.

Objective: Staying independent is an important need for cancer patients living alone. Such patients might have specific informal support needs in order to stay independent. We want to explore which informal support patients living alone perceive as helpful along the cancer care continuum.