Jürg C. Streuli

Experiences of Early Users of Direct-to-Consumer Genomics in Switzerland: An Exploratory Study

Aims: This study explores attitudes, motivations and self-reported impact in connection with direct-to-consumer (DTC) genomic testing amongst a group of life scientists in Switzerland. Methods: Data were collected through: (1) a self-completion online questionnaire, and (2) semi-structured qualitative interviews. Forty participants completed the questionnaire and 10 were interviewed. Results: Curiosity was mentioned as the primary reason for undergoing testing, while less significance was attributed to receiving actionable health information. The opportunity to contribute to research ranked high as a motive for testing. Overall, participants assessed their experience with the test as positive and were willing to recommend it to others. Some reported that the testing had an impact on how they view their health, but only a third of participants planned on showing the results to health practitioners. Participants consistently referred to ‘fun’ when describing several aspects of the testing experience. The ‘fun factor’ manifested itself in different phases of the process, including the motivation for taking the test, receiving the information and putting the test results to use (including sharing and discussing it with others). This finding suggests the need to further explore the concept of personal utility in DTC genomics. Conclusions: Although this group is not representative of the broader population due to both their scientific expertise and their willingness to try out a controversial new technology, their experiences provide valuable insights into the role of personal curiosity and altruism (fostering medical research) as motivations for testing and the utility attributed to both.

Children’s rights in pediatrics

The United Nations Convention of Children’s Rights (UNCRC) introduced in 1989 has generated a global movement for the protection of children’s rights and has brought about a paradigm change in how children are perceived. Pediatric healthcare professionals are interacting with children and therefore with children’s rights on a daily basis. However, although at least 18 of the 54 articles are relevant for pediatric practice, there is limited systematic training on how pediatricians can support children’s rights in the clinical setting. This article discusses the principles and aims of the UNCRC and proposes a comprehensive checklist of rights vis-à-vis issues that arise in clinical practice.

DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey

Treatment and support of a child with DSD calls for experience and expertise in diagnosis, surgical techniques, understanding of psychosocial issues, and recognizing and accepting the significance of individual values of children, families, and support groups. The range of what is considered “appropriate” care and treatment is still very broad and critics point at major gaps between ethical guidelines and current clinical practice. Based on a qualitative study with 27 members of multidisciplinary teams and support groups, we supplement the professional consensus statements and current ethical guidelines with 14 requirements from four different perspectives, to characterize more fully the responsible treatment and support of children and families affected by DSD. Overall, our findings highlight the importance of close collaborations between different experts and a shift from the often simplified dispute about genital surgeries to a more holistic perspective with a long-term management strategy, which should serve as a cornerstone not only for clinical practice but also for future research and evaluation studies.

Attitudes towards decisions about extremely premature infants differed between Swiss linguistic regions in population-based study

Studies have provided insights into the different attitudes and values of healthcare professionals and parents towards extreme prematurity. This study explored societal attitudes and values in Switzerland with regard to this patient group.

Exploring societal solidarity in the context of extreme prematurity

QUESTION Extreme prematurity can result in long-term disabilities. Its impact on society is often not taken into account and deemed controversial. Our study examined attitudes of the Swiss population regarding extreme prematurity and peoples perspectives regarding the question of solidarity with disabled people. METHODS We conducted a nationwide representative anonymous telephone survey with 1210 Swiss residents aged 18 years or older. We asked how people estimate their own personal solidarity, the solidarity of their social environment and the solidarity across the country with disabled persons. Spearmans correlation calculations were used to assess if a correlation exists between solidarity and setting financial limits to intensive care and between solidarity and withholding neonatal intensive care. RESULTS According to 36.0% of the respondents intensive medical care should not be withheld from extremely preterm infants, even if their chances for an acceptable quality of life were poor. For 28.8%, intensive care should be withheld from these infants, and 26.9% held an intermediate position depending on the situation. A total of 31.5% were against setting a financial limit to treatment of extremely preterm newborns with an uncertain future quality of life, 34.2% were in favour and 26.9% were deliberating. A majority (88.8%) considered their solidarity toward disabled people as substantial; the solidarity of their personal environment and of the society at large was estimated as high by 79.1% and 48.6%, respectively. CONCLUSIONS The Swiss population expressed a high level of solidarity which may alleviate some pressure on parents and health care providers in the decision-making process in neonatal intensive care units. In addition, there was no relationship between solidarity and peoples willingness to pay for the care or withholding treatment of extremely preterm babies.

Childrens’ left-turning preference is not modulated by magical ideation

ABSTRACT The literature on human turning preferences is inconsistent. While the few studies with children below 14 years of age uniformly describe an overall left-turning (counterclockwise) tendency, a recent Internet study with more than 1500 adults found a right-sided (clockwise) bias. We set out to investigate spontaneous turning behaviour in children age 5–3 years and, based on neuropsychiatric work in adults, also explored a potential association with magical thinking. Findings indicated a clear left-turning preference, independent of a participants sex and handedness. Whether a child responded a question about the existence of extrasensory communication in the affirmative or not was unrelated to direction and size of turning bias and lateral preference. Our results are consistent with a left-sided turning preference reported for children, but in opposition to the clockwise bias recently described in a large-scale study with adults. Whether they point to a maturational gradient in the preferred direction of spontaneous whole-body rotation or rather to a lack of comparability between measures used in observational versus Internet-based studies remains to be further investigated. Regarding a purported association between body turns and magical thinking, our study is preliminary, as only one single question was used to probe the latter.

The complex interplay of physician, patient, and spouse in preoperative counseling for radical prostatectomy: a comparative mixed-method analysis of 30 videotaped consultations.

Spouses of cancer patients play a crucial role in deciding on therapeutic choices. The aim of our study was to assess their role in counseling for radical prostatectomy.

Sand oder Öl? - Ethik im Getriebe des Gesundheitswesens: Eine Reflexion über die Rolle der Ethik im Gesundheitswesen und ihr Verhältnis zur Ökonomie

Das Eidgenossische Departement des Inneren (EDI) der Schweiz hat im Auftrag von Bundesrat Pascal Couchepin die Auflage gemacht, Ethik und Gesundheitsokonomie gemeinsam in der arztlichen Weiterbildung als obligatorische Themen einzufuhren. Dies, obgleich Ethik und Gesundheitsokonomie oft als sich widersprechende Fachgebiete wahrgenommen werden. Der Artikel zeigt, dass diese Widerspruchlichkeit nur dann besteht, wenn Ethik und Okonomie gegensatzlichen Grundwerten verpflichtet sind. In einem Gesundheitswesen, das den leidenden Menschen in den Mittelpunkt stellt und die stets begrenzten Leistungen und Mittel fair verteilt, schliesen sich Ethik und Okonomie nicht aus, sondern erganzen und unterstutzen sich gegenseitig. Auf dieser Wertebasis hat Ethik die Aufgabe, bewusste ethische Entscheidungsfindung in Organisationen des Gesundheitswesens strukturell und damit nachhaltig wirksam zu machen und so die Entscheidungsqualitat zu fordern, wahrend Okonomie fur einen effizienten Umgang mit den vorhandenen Leistungen...

Correction to: decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses

After publication of the original article [1], the corresponding author noticed the given names and family names of the members included in the Swiss Neonatal End-of-Life Study Group were incorrectly reverted.

Das Kind im Zentrum: Kindeswohl, Kinderrechte, Shared Decision-Making in der Behandlung von Kindern im Akutspital

Zusammenfassung. Kinder unterscheiden sich nicht nur durch spezifische physiologische Merkmale, sondern auch durch ethische und moralische Aspekte. Entscheidungen in der Padiatrie und Kinderchirurgie brauchen deshalb nicht einfach eine angepasste Erwachsenenethik, sondern eine besondere Kind- und Familien-zentrierte Ethik. Eine Entscheidung fur und mit Kindern ist deshalb oftmals das Resultat eines komplexen Prozesses mit zahlreichen Gesprachen im therapeutischen Dreieck zwischen Kind, Eltern und Behandlungsteam. Anhand von Beispielen aus der Klinik zeigen wir die Bedeutung und die praktische Bedeutung von praxisrelevanten Begriffen und Konzepten wie Kindeswohl, Kinderrechten und Shared Decision-Making.