Shared decision-making in adolescent healthcare: a literature review of ethical considerations.

Purpose: Adolescence is a period of growing independence and maturity, within the period of legal minority. As parents or guardians are socially and legally responsible for adolescents' medical decisions, shared decision-making in adolescent healthcare could be ethically challenging. This review aims to identify and map the ethical tensions in shared decision-making in adolescent healthcare.

The Embassy of Good Science - a community driven initiative to promote ethics and integrity in research.

The Embassy of Good Science ( https://www.embassy.science) aims to improve research integrity and research ethics by offering an online, open, 'go-to' platform, which brings together information on research integrity and research ethics and makes that information accessible, understandable, and appealing.

The Parliamentary Inquiry into Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 in Australia: A Qualitative Analysis.

Recently, Australia became the second jurisdiction worldwide to legalize the use of mitochondrial donation technology. The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 allows individuals with a family history of mitochondrial disease to access assisted reproductive techniques that prevent the inheritance of mitochondrial disease. Using inductive content analysis, we assessed submissions sent to the Senate Committee as part of a programme of scientific inquiry and public consultation that informed drafting of the Bill.

Australian public perspectives on genomic data governance: responsibility, regulation, and logistical considerations.

Genomic sequencing generates huge volumes of data, which may be collected or donated to form large genomic databases. Such information can be stored for future use, either for the data donor themselves or by researchers to help improve our understanding of the genetic basis of disease. Creating datasets of this magnitude and diversity is only possible if patients, their families, and members of the public worldwide share their data.

Glutamatergic Neurometabolite Levels in Bipolar Disorder: A Systematic Review and Meta-analysis of Proton Magnetic Resonance Spectroscopy Studies.

Background: The glutamatergic system is thought to play an important role in the pathophysiology of bipolar disorder (BD). While there has been an increase in proton magnetic resonance spectroscopy studies examining this neurotransmission system, the results are inconsistent. Possible reasons for the inconsistency, including clinical features such as mood state and childhood versus adulthood age, were not addressed in previous meta-analyses.

Predictors of COVID-19 vaccine hesitancy in Chad: A cross-sectional study.

Vaccination against the COVID-19 virus is currently the best option to combat the SARS-CoV-2 pandemic worldwide. However, in addition to logistical and economic barriers, hesitancy to be vaccinated threatens to jeopardize efforts to contain the disease. An increasing number of people in Africa are delaying or rejecting recommended vaccines.

The Value-Free Ideal of Science: A Useful Fiction? A Review of Non-epistemic Reasons for the Research Integrity Community.

Even if the "value-free ideal of science" (VFI) were an unattainable goal, one could ask: can it be a useful fiction, one that is beneficial for the research community and society? This question is particularly crucial for scholars and institutions concerned with research integrity (RI), as one cannot offer normative guidance to researchers without making some assumptions about what ideal scientific research looks like. Despite the insofar little interaction between scholars studying RI and those working on values in science, the overlap of topics and interests make collaboration between the two fields promising for understanding research and its ethics. Here, we identify-for the use of RI scholars-the non-epistemic reasons (societal, political, professional) for and against the VFI considered in the literature.

Australian public perspectives on genomic data storage and sharing: Benefits, concerns and access preferences.

Diagnostic genomic sequencing generates unprecedented amounts of data. In addition to its primary use, this data could be used for a wide range of secondary purposes, including research and informing future healthcare for the data donor. These opportunities may require data to be shared with third parties.

Challenges related to data protection in clinical research before and during the COVID-19 pandemic: An exploratory study.

Background: The COVID-19 pandemic brought global disruption to health, society and economy, including to the conduct of clinical research. In the European Union (EU), the legal and ethical framework for research is complex and divergent. Many challenges exist in relation to the interplay of the various applicable rules, particularly with respect to compliance with the General Data Protection Regulation (GDPR).

Genetic testing for psychiatric illness in children: ethical issues.

Purpose Of Review: Genetic and genomic technologies are showing great potential in the field of psychiatry. Genetic testing for psychiatric conditions poses a range of ethical challenges, many of which are likely to be exacerbated for paediatric populations. As a large proportion of psychiatric conditions present in late adolescence and early adulthood, testing in childhood may be considered in some circumstances.

Appropriate inclusion of adult research participants with intellectual disability: an in-depth review of guidelines and policy statements.

The history of human-subject experimentation has shown the need for safeguards to protect participants from abuse. Balancing participant protection with adequate representation of the adult intellectual disability population in research presents an important challenge. Our study aimed to analyze guidance on the appropriate inclusion of adults with intellectual disability who are or are not able to consent to biomedical research participation.

Co-creation with research participants to inform the design of electronic informed consent.

Objective: This study aimed to provide recommendations for a personalized electronic informed consent interface that is adapted to research participants' needs and could enable a longitudinal interaction between the participants and the research team.

Methods: The co-creation process consisted of three co-creation workshops, one focus group discussion, and four semi-structured interviews. In total, 24 participants, who had taken part in four disparate clinical studies in Belgium, were involved.

The patient with 41 reports: Analysis of laboratory exome sequencing reporting of a "virtual patient".

Purpose: Few studies have systematically analyzed the structure and content of laboratory exome sequencing reports from the same patient.

Methods: We merged 8 variants from patients into "normal" exomes to create virtual patient-parent trios. We provided laboratories worldwide with the data and patient phenotype information (developmental delay, dysmorphic features, and cardiac hypertrophy).

Informing relatives of their genetic risk: an examination of the Belgian legal context.

Findings from genomic sequencing can have important implications for patients and relatives. For this reason, most professional guidelines support that patients have an ethical duty to inform relatives and, when disclosure does not occur, most guidelines allow health-care professionals (HCPs) to breach confidentiality. Translating the ethical duties to respect the patient's confidentiality and prevent harm in at-risk relatives into legislation is a complex issue due to the both personal and familial nature of genetic information.

Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders' perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them.

Physician Aid in Dying for Dementia: The Problem With the Early vs. Late Disease Stage Distinction.

Physician aid in dying (PAD) based on dementia is a contentious, highly debated topic. Several countries are considering extending their existing laws to include requests in incompetent patients based on a previously written advance directive. Discussions about this issue often invoke a distinction based on disease stage.

Challenges in cardiovascular pharmacogenomics implementation: a viewpoint from the European Society of Cardiology Working Group on Cardiovascular Pharmacotherapy.

Pharmacogenomics promises to advance cardiovascular therapy, but there remain pragmatic barriers to implementation. These are particularly important to explore within Europe, as there are differences in the populations, availability of resources, and expertise, as well as in ethico-legal frameworks. Differences in healthcare delivery across Europe present a challenge, but also opportunities to collaborate on pharmacogenomics implementation.

Disclosure of genetic information to family members: a systematic review of normative documents.

Purpose: Findings from genomic sequencing can have important implications for patients and family members. Yet, when a patient does not consent to the disclosure of genetic information to relatives, it is unclear how health-care professionals (HCPs) should balance their responsibilities toward patients and their family members and whether breaches in confidentiality are warranted.

Methods: We conducted a systematic review of normative documents to understand how HCPs should discuss and facilitate family disclosure, and what should be done in cases where the patient does not consent to disclosure.

The role of pharmacogenomics in contemporary cardiovascular therapy: a position statement from the European Society of Cardiology Working Group on Cardiovascular Pharmacotherapy.

There is a strong and ever-growing body of evidence regarding the use of pharmacogenomics to inform cardiovascular pharmacology. However, there is no common position taken by international cardiovascular societies to unite diverse availability, interpretation, and application of such data, nor is there recognition of the challenges of variation in clinical practice between countries within Europe. Aside from the considerable barriers to implementing pharmacogenomic testing and the complexities of clinically actioning results, there are differences in the availability of resources and expertise internationally within Europe.

Research integrity codes of conduct in Europe: Understanding the divergences.

In the past decade, policy-makers in science have been concerned with harmonizing research integrity standards across Europe. These standards are encapsulated in the European Code of Conduct for Research Integrity. Yet, almost every European country today has its own national-level code of conduct for research integrity.