Qualitative study of GPs' views and experiences of population-based preconception expanded carrier screening in the Netherlands: bioethical perspectives.

Objective: Between 2016 and 2017, a population-based preconception expanded carrier screening (PECS) test was developed in the Netherlands during a pilot study. It was subsequently made possible in mid-2018 for couples to ask to have such a PECS test from specially trained general practitioners (GPs). Research has described GPs as crucial in offering PECS tests, but little is known about the GPs' views on PECS and their experiences of providing this test.

GP-provided couple-based expanded preconception carrier screening in the Dutch general population: who accepts the test-offer and why?

Next generation sequencing has enabled fast and relatively inexpensive expanded carrier screening (ECS) that can inform couples' reproductive decisions before conception and during pregnancy. We previously showed that a couple-based approach to ECS for autosomal recessive (AR) conditions was acceptable and feasible for both health care professionals and the non-pregnant target population in the Netherlands. This paper describes the acceptance of this free test-offer of preconception ECS for 50 severe conditions, the characteristics of test-offer acceptors and decliners, their views on couple-based ECS and reasons for accepting or declining the test-offer.

Expanded carrier screening for autosomal recessive conditions in health care: Arguments for a couple-based approach and examination of couples' views.

Background: Expanded carrier screening (ECS) is aimed at detecting carrier states for autosomal recessive (AR) or X-linked conditions in couples from the general population planning a pregnancy. ECS is currently usually offered on an individual basis despite the fact that, for AR conditions, only carrier couples are at risk of affected offspring. In this paper, we present a couple-based ECS test-offer for AR conditions, where results are offered as couple-results only, and describe how couples view such an offer.

Expanded carrier screening: what determines intended participation and can this be influenced by message framing and narrative information?

Next-generation sequencing enabled us to create a population-based expanded carrier screening (ECS) test that simultaneously tests for 50 serious autosomal recessive diseases. Before offering this test universally, we wanted to know what factors are related to intended participation and how the general public can be informed about the test without being influenced in their intention to participate. We studied this by measuring to what extent 'message framing' and 'narrative information' can influence people's intended participation.

Population-based preconception carrier screening: how potential users from the general population view a test for 50 serious diseases.

With the increased international focus on personalized health care and preventive medicine, next-generation sequencing (NGS) has substantially expanded the options for carrier screening of serious, recessively inherited diseases. NGS screening tests not only offer reproductive options not previously available to couples, but they may also ultimately reduce the number of children born with devastating disorders. To date, preconception carrier screening (PCS) has largely targeted single diseases such as cystic fibrosis, but NGS allows the testing of many genes or diseases simultaneously.

Maximising the efficiency of clinical screening programmes: balancing predictive genetic testing with a right not to know.

We explored the dilemma between patients' right not to know their genetic status and the efficient use of health-care resources in the form of clinical cancer screening programmes. Currently, in the Netherlands, 50% risk carriers of heritable cancer syndromes who choose not to know their genetic status have access to the same screening programmes as proven mutation carriers. This implies an inefficient use of health-care resources, because half of this group will not carry the familial mutation.

Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature.

Purpose: With rapid advances in genetic technologies, new genetic information becomes available much faster today than just a few years ago. This has raised questions about whether clinicians have a duty to recontact eligible patients when new genetic information becomes available and, if such duties exist, how they might be implemented in practice.

Methods: We report the results of a systematic literature search on the ethical, legal, social (including psychological), and practical issues involved in recontacting former patients who received genetic services.

Suffering in children: opinions from parents and health-care professionals.

Unlabelled: Alleviation of suffering is considered to be one of the important goals of medical interventions. Understanding of what constitutes suffering in children admitted to a pediatric intensive care unit (PICU) is lacking. This study aims to assess perceptions by parents, doctors, and nurses of suffering in critically ill children.

Toward a naturalized clinical ethics.

Clinical ethicists tend to see themselves as moral experts to be called in when clinicians encounter a particularly difficult moral problem. Drawing on a naturalized moral epistemology, we argue that clinicians already have the moral knowledge they need-the norms and values that guide clinical practice are built right into the various health care professions. To reflect on their practice, clinicians need to (a) be aware of their own professional norms and values; (b) be able to express them to their colleagues, their patients, and the patients' families; and (c) work together with these other actors to provide ethically responsible care.

Training healthcare professionals as moral case deliberation facilitators: evaluation of a Dutch training programme.

Until recently, moral case deliberation (MCD) sessions have mostly been facilitated by external experts, mainly professional ethicists. We have developed a train the facilitator programme for healthcare professionals aimed at providing them with the competences needed for being an MCD facilitator. In this paper, we present the first results of a study in which we evaluated the programme.

Development of a student rating scale to evaluate teachers' competencies for facilitating reflective learning.

Context: teaching students in reflection calls for specific teacher competencies. We developed and validated a rating scale focusing on Student perceptions of their Teachers' competencies to Encourage Reflective Learning in small Groups (STERLinG).

Methods: we applied an iterative procedure to reduce an initial list of 241 items pertaining to teacher competencies to 47 items.

Theoretical resources for a globalised bioethics.

In an age of global capitalism, pandemics, far-flung biobanks, multinational drug trials and telemedicine it is impossible for bioethicists to ignore the global dimensions of their field. However, if they are to do good work on the issues that globalisation requires of them, they need theoretical resources that are up to the task. This paper identifies four distinct understandings of 'globalised' in the bioethics literature: (1) a focus on global issues; (2) an attempt to develop a universal ethical theory that can transcend cultural differences; (3) an awareness of how bioethics itself has expanded, with new centres and journals emerging in nearly every corner of the globe; (4) a concern to avoid cultural imperialism in encounters with other societies.

Ethical aspects of soft tissue engineering for congenital birth defects in children--what do experts in the field say?

This article is part of the EuroSTEC project, which aims at developing tissue engineering-based treatments for structural disorders present at birth. EuroSTEC is positioned at the intersection of three areas with their own ethical issues: (1) regenerative medicine, (2) research with pregnant women and fetuses, and (3) research with neonates. Because of the overlap of these three areas in this project, we can expect to be confronted with new ethical challenges.

Parental experience at the end-of-life in children with cancer: 'preservation' and 'letting go' in relation to loss.

Purpose: For children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility.

Making sense of risk. Donor risk communication in families considering living liver donation to a child.

This paper contributes to the growing line of thought in bioethics that respect for autonomy should not be equated to the facilitation of individualistic self determination through standard requirements of informed consent in all healthcare contexts. The paper describes how in the context of donation for living related liver transplantation (LRLT) meaningful, responsible decision making is often embedded within family processes and its negotiation. We suggest that good donor risk communication in families promote "conscientious autonomy" and "reflective trust".

The quality of caring relationships.

In health care, relationships between patients or disabled persons and professionals are at least co-constitutive for the quality of care. Many patients complain about the contacts and communication with caregivers and other professionals. From a care-ethical perspective a good patient-professional relationship requires a process of negotiation and shared understanding about mutual normative expectations.

The role of peer meetings for professional development in health science education: a qualitative analysis of reflective essays.

Introduction: The development of professional behaviour is an important objective for students in Health Sciences, with reflective skills being a basic condition for this development. Literature describes a variety of methods giving students opportunities and encouragement for reflection. Although the literature states that learning and working together in peer meetings fosters reflection, these findings are based on experienced professionals.

Ending the life of a newborn: the Groningen Protocol.

Several criticisms of the Groningen Protocol rest on misunderstandings about how it works or which babies it concerns. Some other objections-about quality-of-life judgments and parents' role in making decisions about their children-cannot be easily cleared away, but at least in the context of Dutch culture and medicine, the protocol is acceptable.

What is it to be a daughter? Identities under pressure in dementia care.

This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person's well-being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members.

A national guideline for palliative sedation in the Netherlands.

The first national guideline on palliative sedation in The Netherlands has been adopted by the General Board of the Royal Dutch Medical Association. By law, the physician is obliged to take this guideline into consideration. In this paper, we present the main principles of the guideline.

Palliative sedation in the Netherlands: starting-points and contents of a national guideline.

In December 2005 the first national guideline for palliative sedation in the Netherlands was published. This guideline was developed by a committee of the Royal Dutch Medical Association, at the request of the Dutch government. The guideline defines palliative sedation as 'the intentional lowering of consciousness of a patient in the last phase of his or her life'.

Two women with multiple sclerosis and their caregivers: conflicting normative expectations.

It is not uncommon that nurses are unable to meet the normative expectations of chronically ill patients. The purpose of this article is to describe and illustrate Walker's expressive-collaborative view of morality to interpret the normative expectations of two women with multiple sclerosis. Both women present themselves as autonomous persons who make their own choices, but who also have to rely on others for many aspects of their lives, for example, to find a new balance between work and social contacts or to find work.

Enhancing reflection: an interpersonal exercise in ethics education.

There are no moral cookbooks--no algorithms for whipping up moral confections to suit every occasion. But more modest and flexible tools might still be useful for practical ethics. One team describes how professionals can be taught to use a framework for understanding moral problems.