Development of a digital risk-prediction tool based on family health history for the general population: legal and ethical implications.

Cardiovascular diseases, both inherited and familial, indicate a risk of early and preventable cardiovascular events for relatives of affected individuals. A digital risk-prediction tool that enables general population individuals to evaluate their cardiovascular risk based on family health history could be a responsible approach to facilitate early detection and improve public health, but development and use of such a tool is not without legal and ethical requirements. At the start of tool development, experts addressed potential legal and ethical implications.

The academic impact of paediatric research agendas: a descriptive analysis.

Background: Increasingly, researchers are involving children and young people in designing paediatric research agendas, but as far as we were able to determine, only one report exists on the academic impact of such an agenda. In our opinion, the importance of insight into the impact of research agendas designed together with children and young people cannot be overstated. The first aim of our study was therefore to develop a method to describe the academic impact of paediatric research agendas.

AI-Inclusivity in Healthcare: Motivating an Institutional Epistemic Trust Perspective.

This paper motivates institutional epistemic trust as an important ethical consideration informing the responsible development and implementation of artificial intelligence (AI) technologies (or AI-inclusivity) in healthcare. Drawing on recent literature on epistemic trust and public trust in science, we start by examining the conditions under which we can have institutional epistemic trust in AI-inclusive healthcare systems and their members as providers of medical information and advice. In particular, we discuss that institutional epistemic trust in AI-inclusive healthcare depends, in part, on the reliability of AI-inclusive medical practices and programs, its knowledge and understanding among different stakeholders involved, its effect on epistemic and communicative duties and burdens on medical professionals and, finally, its interaction and alignment with the public's ethical values and interests as well as background sociopolitical conditions against which AI-inclusive healthcare systems are embedded.

Systematic reanalysis of genomic data by diagnostic laboratories: a scoping review of ethical, economic, legal and (psycho)social implications.

With the introduction of Next Generation Sequencing (NGS) techniques increasing numbers of disease-associated variants are being identified. This ongoing progress might lead to diagnoses in formerly undiagnosed patients and novel insights in already solved cases. Therefore, many studies suggest introducing systematic reanalysis of NGS data in routine diagnostics.

[Active life termination in children aged 1-12 years].

In this article we discuss active termination of life in children aged 1-12 years. It is expected that in 2024 active termination of life will be regulated for children between the ages of 1 and 12 who suffer unbearably, when other options to relieve their suffering are not enough. Using a case, we describe how a request for active termination of life in a child can arise and how physicians can respond to it.

The ethical challenges of personalized digital health.

Personalized digital health systems (pHealth) bring together in sharp juxtaposition very different yet hopefully complementary moral principles in the shared objectives of optimizing health care and the health status of individual citizens while maximizing the application of robust clinical evidence through harnessing powerful and often complex modern data-handling technologies. Principles brought together include respecting the confidentiality of the patient-clinician relationship, the need for controlled information sharing in teamwork and shared care, benefitting from healthcare knowledge obtained from real-world population-level outcomes, and the recognition of different cultures and care settings. This paper outlines the clinical process as enhanced through digital health, reports on the examination of the new issues raised by the computerization of health data, outlines initiatives and policies to balance the harnessing of innovation with control of adverse effects, and emphasizes the importance of the context of use and citizen and user acceptance.

How to Ensure Inclusivity in Large-Scale General Population Cohort Studies? Lessons Learned with Regard to Including and Assessing Sex, Gender, and Sexual Orientation.

Despite recent advances in the measurement of sex, gender, and sexual orientation in large-scale cohort studies, the three concepts are still gaining relatively little attention, may be mistakenly equated, or non-informatively operationalized. The resulting imprecise or lacking information hereon in studies is problematic, as sex, gender, and sexual orientation are important health-related factors. Omission of these concepts from general population cohort studies might dismiss participants' identity and experiences and pushes research on sexual or gender minority populations toward purposive sampling, potentially introducing selection bias.

Involving children and young people in paediatric research priority setting: a narrative review.

Objective: The objective of this study is twofold: first, to describe the methods used when involving children and young people (CYP) in developing a paediatric research agenda and, second, to evaluate how the existing literature describes the impact of involving CYP. We distinguish three forms of impact: impact on the research agenda (focused impact), impact on researchers and CYP (diffuse impact) and impact on future research (research impact).

Design: A narrative review of MEDLINE, PsycINFO, Web of Science and Google Scholar was conducted from October 2016 to January 2022.

A genetic researcher's devil's dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?

Background: With advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands (the first person in a family in whom a genetic predisposition is identified) are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts.

Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.

Data repositories, like research biobanks, seek to optimise the number of responding participants while simultaneously attempting to increase the amount of data donated per participant. Such efforts aim to increase the repository's value for its uses in medical research to contribute to improve health care, especially when data linkage is permitted by participants. We investigated individuals' motives for participating in such projects and potential reasons for their withdrawal from participation in a population-based biobank.

Ethical implications of COVID-19: vulnerabilities in a global perspective.

The COVID-19 pandemic has highlighted a number of ethical issues that typically have not been addressed openly in public debate. The argument 'protect the vulnerable' has been a mantra to motivate all sorts of measures, many of them not scientifically motivated. In this article, the concept of 'vulnerability' is analyzed, and a model is suggested to distinguish layers of vulnerability that may or may not result in poor outcomes, depending on how many layers are present and how they interact.

Ethics in Design and Implementation of Technologies for Workplace Health Promotion: A Call for Discussion.

This study aims to initiate discussion on the ethical issues surrounding the development and implementation of technologies for workplace health promotion. We believe this is a neglected topic and such a complex field of study that we cannot come up with solutions easily or quickly. Therefore, this study is the starting point of a discussion about the ethics of and the need for policies around technologies for workplace health promotion.

Knowledge, health beliefs and attitudes towards dementia and dementia risk reduction among descendants of people with dementia: a qualitative study using focus group discussions.

Background: Individuals with a parental family history of dementia have an increased risk of developing dementia because they share their genes as well as their psychosocial behaviour. Due to this increased risk and their experience with dementia, they may be particularly eager to receive information regarding dementia risk reduction (DRR). This study evaluated the knowledge, beliefs and attitudes towards dementia and DRR among descendants of people with dementia.

COVID-19: opportunities for public health ethics?

Public health ethics is the discipline that ensures that public health professionals and policy makers explain what they do, and why. During the COVID-19 pandemic, ethical deliberations often did not feature explicitly in public health decisions, thus reducing transparency and consistency in decision-making processes, and resulting in loss of trust by the general public. A public health ethics framework based on principles would add to transparency and consistency in public health decision-making.

The attitudes of healthy children and researchers towards the challenges of involving children in research: an exploratory study.

Background: A growing trend in research is to involve co-researchers. It is referred to as Patient and Public Involvement (PPI) and comprises three groups: the patients, the public, and the researchers. Like in adult public involvement, healthy children can also be considered as 'the public'.

Breaking bad news: what parents would like you to know.

Objective: Breaking bad news about life-threatening and possibly terminal conditions is a crucial part of paediatric care for children in this situation. Little is known about how the parents of children with life-threatening conditions experience communication of bad news. The objective of this study is to analyse parents' experiences (barriers and facilitators) of communication of bad news.

Uptake and effectiveness of a tailor-made online lifestyle programme targeting modifiable risk factors for dementia among middle-aged descendants of people with recently diagnosed dementia: study protocol of a cluster randomised controlled trial (Demin study).

Introduction: Descendants of patients with dementia have a higher risk to develop dementia. This study aims to investigate the uptake and effectiveness of an online tailor-made lifestyle programme for dementia risk reduction (DRR) among middle-aged descendants of people with recently diagnosed late-onset dementia.

Methods And Analysis: Demin is a cluster randomised controlled trial, aiming to include 21 memory clinics of which 13 will be randomly allocated to the passive (poster and flyer in a waiting room) and 8 to the active recruitment strategy (additional personal invitation by members of the team of the memory clinic).

'I actually felt like I was a researcher myself.' On involving children in the analysis of qualitative paediatric research in the Netherlands.

Objectives: To evaluate the feasibility of a new approach to paediatric research whereby we involved children in analysing qualitative data, and to reflect on the involvement process.

Setting: This was a single-centre, qualitative study in the Netherlands. It consisted of research meetings with individual children at home (Phase I) or group meetings at school (Phase II).

Demographic and prosocial intrapersonal characteristics of biobank participants and refusers: the findings of a survey in the Netherlands.

Research in genetics relies heavily on voluntary contributions of personal data. We aimed to acquire insights into the differences between participants and refusers of participation in a Dutch population-based biobank. Accordingly, we assessed the demographic and prosocial intrapersonal characteristics of respondents who participated (n = 2615) or refused to participate (n = 404) in the Lifelines biobank and databank.

Motives of contributing personal data for health research: (non-)participation in a Dutch biobank.

Background: Large-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their participation.

Understanding the child-doctor relationship in research participation: a qualitative study.

Background: Children have reported that one reason for participating in research is to help their doctor. This is potentially harmful if associated with coercive consent but might be beneficial for recruitment. We aimed to explore children's perceptions of the child-doctor relationship in research.

Health Self-Management Applications in the Work Environment: The Effects on Employee Autonomy.

Organizations increasingly use Health Self-Management Applications (HSMAs) that provide feedback information on health-related behaviors to their employees so that they can self-regulate a healthy lifestyle. Building upon Self-Determination Theory, this paper empirically investigates the basic assumption of HSMAs that their self-management feature provides employees with autonomy to self-regulate their health-related behavior. The two-phase experimental study contained a 4-weeks HSMA intervention in a healthcare work environment with a feedback factor (performance vs.

Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands.

Objective: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions.

Design: In a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years) who were living with a life-threatening illness or who had died after a medical trajectory (a maximum of 5 years after the death of the child). Sampling was aimed at obtaining maximum variety for a number of factors.