Background Studying the contribution of individual countries to leading journals in a specific discipline can highlight which countries have the most impact on that discipline and whether a geographic bias exists. This article aims to examine the international distribution of publications in the field of bioethics. Methods Retrospective quantitative study of nine peer reviewed journals in the field of bioethics and medical ethics (Bioethics, Cambridge Quarterly of Healthcare Ethics, Hastings Center Report, Journal of Clinical Ethics, Journal of Medical Ethics, Kennedy (...) Institute of Ethics Journal, Nursing Ethics, Christian Bioethics, and Theoretical Medicine and Bioethics). Results In total, 4,029 articles published between 1990 and 2003 were retrieved from the nine bioethical journals under study. The United States (59.3%, n = 2390), the United Kingdom (13.5%, n = 544), Canada (4%, n = 160) and Australia (3.8%, n = 154) had the highest number of publications in terms of absolute number of publications. When normalized to population size, smaller affluent countries, such as New Zealand, Finland and Sweden were more productive than the United States. The number of studies originating from the USA was decreasing in the period between 1990 and 2003. Conclusion While a lot of peer reviewed journals in the field of bioethics profile themselves as international journals, they certainly do not live up to what one would expect from an "international" journal. The fact that English speaking countries, and to a larger extent American authors, dominate the international journals in the field of bioethics is a clear geographic bias towards the bioethical discussions that are going on in these journals. (shrink)

ABSTRACTSince its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence into bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of (...) bioethics. Thirdly, the meta‐ethical distinction between ‘is’ and ‘ought’ created a ‘natural’ border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence‐based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared. (shrink)

Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence into bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of (...) bioethics. Thirdly, the meta‐ethical distinction between ‘is’ and ‘ought’ created a ‘natural’ border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence‐based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared. (shrink)

The field of bioethics is increasingly coming into contact with empirical research findings. In this article, we ask what role empirical research can play in the process of ethical clarification and decision-making. Ethical reflection almost always proceeds in three steps: the description of the moral question,the assessment of the moral question and the evaluation of the decision-making. Empirical research can contribute to each step of this process. In the description of the moral object, first of all, empirical research has a (...) role to play in the description of morally relevant facts. It plays a role in answering the “reality-revealing questions” (what, why,how, who, where and when), in assessing the consequences and in proposing alternative courses of action. Secondly, empirical research plays a role in assessing the moral question. It must be acknowledged that research possesses “the normative power of the factual,” which can also become normative by suppressing other norms. However, inductive normativity should always be balanced out by a deductive form of normativity. Thirdly, empirical research also has a role to play in evaluating the decision-making process. It can rule out certain moral choices by pointing out the occurrence of certain unexpected consequences or effects. It can also be useful, however, as a sociology of bioethics in which the discipline of bioethics itself becomes an object of research. (shrink)

The field of bioethics is increasingly coming into contact with empirical research findings. In this article, we ask what role empirical research can play in the process of ethical clarification and decision-making. Ethical reflection almost always proceeds in three steps: the description of the moral question,the assessment of the moral question and the evaluation of the decision-making. Empirical research can contribute to each step of this process. In the description of the moral object, first of all, empirical research has a (...) role to play in the description of morally relevant facts. It plays a role in answering the “reality-revealing questions” (what, why,how, who, where and when), in assessing the consequences and in proposing alternative courses of action. Secondly, empirical research plays a role in assessing the moral question. It must be acknowledged that research possesses “the normative power of the factual,” which can also become normative by suppressing other norms. However, inductive normativity should always be balanced out by a deductive form of normativity. Thirdly, empirical research also has a role to play in evaluating the decision-making process. It can rule out certain moral choices by pointing out the occurrence of certain unexpected consequences or effects. It can also be useful, however, as a sociology of bioethics in which the discipline of bioethics itself becomes an object of research. (shrink)

ABSTRACT Publications are primarily a means of communicating scientific information to colleagues, but they are much more than that. Publications in peer reviewed journals are proof of academic competence, are used as a crucial component in evaluation criteria for academic promotion and fundraising and increase the prestige of research centres and universities. The urgent need for publications has also led to abuses in authorship. In the past the single‐author article was the rule, but over the past decades, the average number (...) of authors on scientific manuscripts has drastically increased. In the field of bioethics, however, no research has been undertaken to study whether the percentage of single‐author articles is decreasing, the proportion of multi‐author articles is increasing or the average number of authors per article is increasing. The objective of this research is to analyze these trends in authorship for the period 1990–2003 in peer reviewed journals in the field of bioethics. In the nine peer reviewed journals from the field of bioethics we studied, we observed a significant increase of the multi‐author article and of the average number of authors. This is mainly due to the increase in the number of publications with an empirical design. This growing trend is a challenge for the editors of journals in the field of bioethics to enhance awareness about the value and definition of authorship. (shrink)

Presumed consent alone will not solve the organ shortage, but it will create an ethical and legal context that supports organ donation, respects individuals who object to organ donation, relieves families from the burden of decision making, and can save lives.

In the early days of organ transplantation from deceased donors, the surgical team would bring the donor into the operating room with the recipient, the respirator would be stopped, and the team would wait for the donor’s heart to cease beating. This type of organ donation has been defined as donation after cardiac death, also referred to as non-heart-beating donation. These donors were not declared dead using neurological criteria, but rather using conventional cardiorespiratory criteria. In 1959, Mollaret and Goulon coined (...) the term “coma dépassé” for the patients with an irreversible state of coma and apnea. Jean Morelle and Guy Alexandre of the Catholic University of Louvain, Belgium, were the first to introduce a set of brain death criteria based on the description of coma dépassé, and carried out, in 1963, the first transplants from a brain dead donor in their country and in the world. (shrink)

The increasing implementation of next-generation sequencing technologies in the clinical context and the expanding commercial offer of genetic tests directly-toconsumers has increased the availability of previously inaccessible genetic information. A particular concern in both situations is how the volume of novel information will affect the processing of genetic and genomic information from minors. For minors, it is argued that in the provision of genetic testing, their “right not to know” should be respected as much as possible. Testing a minor early (...) in life eliminates the possibility for the minor to make use of his or her “right not to know.” The article discusses the theoretical underpinnings of the right not know, analyzes reasons why various direct-to-consumer companies process samples from minors, and discusses the right not to know in relation to common complex disorders in a pediatric population. (shrink)

In the last few decades, great progress has been made in both genetic and genomic research. The development of the Human Genome Project has increased our knowledge of the genetic basis of diseases and has given a tremendous momentum to the development of new technologies that make widespread genetic testing possible and has increased the availability of previously inaccessible genetic information. Two examples of this exponential evolution are the increasing implementation of next-generation sequencing technologies in the clinical context and the (...) expanding commercial offer of genetic tests directly-to-consumers.Firstly, the rapid development of next generation sequencing technologies has substantially reduced both the cost and the time required to sequence an entire human genome. These technologies are increasingly being used in the clinical setting with the goal of diagnosing conditions of presumed genetic origin that cannot be explained by targeted sequencing approaches. (shrink)

In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing practices by clinicians and researchers, recent initiatives have been observed in which individuals are sharing personal genomic data. The involvement of individuals in such initiatives is facilitated by the increased accessibility of personal genomic data, offered by private test providers along with availability of online networks. (...) Personal webpages and on-line data sharing platforms such as Consent to Research, Free the Data, and Genomes Unzipped are being utilized to host and share genotypes, electronic health records and family history uploaded by individuals. Although personal genomic data sharing initiatives vary in nature, the emphasis on the individuals’ control on their data in order to benefit research and ultimately health care has seen as a key theme across these initiatives. In line with the growing practice of personal genomic data sharing, this paper aims to shed light on the potential challenges surrounding these initiatives. As in the course of these initiatives individuals are solicited to individually balance the risks and benefits of sharing their genomic data, their awareness of the implications of personal genomic data sharing for themselves and their family members is a necessity. Furthermore, given the sensitivity of genomic data and the controversies around their complete de-identifiability, potential privacy risks and harms originating from unintended uses of data have to be taken into consideration. (shrink)

Approximately a quarter of a billion people around the world suffer from malaria each year. Most cases are located in sub-Saharan Africa where Anopheles gambiae mosquitoes are the principal vectors of this public health problem. With the use of CRISPR-based gene drives, the population of mosquitoes can be modified, eventually causing their extinction. First, we discuss the moral status of the organism and argue that using genetically modified mosquitoes to combat malaria should not be abandoned based on some moral value (...) of A. gambiae. Secondly, we argue that environmental impact studies should be performed to obtain an accurate account of the possible effects of a potential eradication of the organism. However, the risks from the purposeful extinction of A. gambiae should not overtake the benefits of eradicating malaria and risk assessments should be used to determine acceptable risks. Thirdly, we argue that the eventual release of the genetically modified mosquitoes will depend on transparency, community involvement, and cooperation between different nations. (shrink)

This article discusses the relation between empirical and normative approaches in bioethics. The issue of dwarf tossing, while admittedly unusual, is chosen as a point of departure because it challenges the reader to look with fresh eyes upon several central bioethical themes, including human dignity, autonomy, and the protection of vulnerable people. After an overview of current approaches to the integration of empirical and normative ethics, we consider five ways that the empirical and normative can be brought together to speak (...) to the problem of dwarf tossing: prescriptive applied ethics, theoretical ethics, critical applied ethics, particularist ethics and integrated empirical ethics. We defend a position of critical applied ethics that allows for a two-way relation between empirical and normative theories. Against efforts fully to integrate the normative and the empirical into one synthesis, we propose that the two should stand in tension and relation to one another. The approach we endorse acknowledges that a social practice can and should be judged both by the gathering of empirical data and by normative ethics. Critical applied ethics uses a five stage process that includes: (a) determination of the problem, (b) description of the problem, (c) empirical study of effects and alternatives, (d) normative weighing and (e) evaluation of the effects of a decision. In each stage, we explore the perspective from both the empirical (sociological) and the normative ethical point of view. We conclude by applying our five-stage critical applied ethics to the example of dwarf tossing. (shrink)

BackgroundCurrent preimplantation genetic testing (PGT) technologies enable embryo genotyping across the whole genome. This has led to the development of polygenic risk scoring of human embryos (PGT-P). Recent implementation of PGT-P, including screening for intelligence, has been extensively covered by media reports, raising major controversy. Considering the increasing demand for assisted reproduction, we evaluated how information about PGT-P is communicated in press media and explored the diversity of ethical themes present in the public debate.MethodsLexisNexis Academic database and Google News were (...) searched to identify articles about polygenic embryo screening. This led to 535 news articles. 59 original articles met the inclusion criteria. Inductive content analysis was used to analyse these articles.Results8.8% of articles gave embryo polygenic scoring a positive portrayal, while 36.8% expressed a negative attitude. 54.4% were neutral, mostly highlighting limited practical value of the technology in in vitro fertilization settings. We identified five main ethical themes that are also present in academic literature and the broader debate on reproductive technologies: a slippery slope towards designer babies, well-being of the child and parents, impact on society, deliberate choice and societal readiness.ConclusionsImplementation of embryo polygenic profiling engenders a need for specific recommendations. Current media analysis discloses important ethical themes to consider when creating future guidelines for PGT-P. (shrink)

Participation in healthcare decision-making is considered to be an important right of minors, and is highlighted in both international legislation and public policies. However, despite the legal recognition of children’s rights to participation, and also the benefits that children experience by their involvement, there is evidence that legislation is not always translated into healthcare practice. There are a number of factors that may impact on the ability of the child to be involved in decisions regarding their medical care. Some of (...) these factors relate to the child, including their capacity to be actively involved in these decisions. Others relate to the family situation, sociocultural context, or the underlying beliefs and practices of the healthcare provider involved. In spite of these challenges to including children in decisions regarding their clinical care, we argue that it is an important factor in their treatment. The extent to which children should participate in this process should be determined on a case-by-case basis, taking all of the potential barriers into account. (shrink)

Direct-to-consumer (DTC) genetic tests (GT) enable consumers to access a wide range of GT, without involving a healthcare professional, promoting an increasing disassociation of genetics from the clinical context. This study explores, through semi-structured interviews, the experiences and attitudes of European clinical geneticists towards DTCGT. Our results indicate that the participants have limited experience of consultations with patients regarding such tests. The majority of participants stated that consumers purchased tests out of curiosity and sought a general interpretation of test results (...) by a healthcare professional. Most respondents were skeptical of the quality of tests, especially regarding their clinical utility. The participants supported the importance of medical supervision and genetic counseling in this context. Finally, most respondents considered it their duty to accept consultations concerning DTCGT results. However, due to concerns over limited time and potential downstream costs, some participants supported that a prioritization system based on guidelines would be necessary. (shrink)

Developing World Bioethics, Volume 22, Issue 1, Page 15-22, March 2022.

On September 23, 2002, the Belgian law on euthanasia came into force. This makes Belgium the second country in the world to have an act on euthanasia. Even though there is currently a legal regulation of euthanasia in Belgium, very little is known about how this legal regulation could be translated into care for patients who request euthanasia. Although euthanasia-related mortality rates in Belgium are low, ranging from 0.30% to 1.20%, it can be expected that caregivers will increasingly be confronted (...) with euthanasia requests and will, therefore, be more involved in the care for these patients. (shrink)

The World Anti-Doping Agency sets out a detailed description of what its own conception of the “spirit of sport” as employed in the World Anti-Doping Code entails. However, controversies as to the significance and meaning to be ascribed to the term abound in the literature. In order to unravel the core of the debates and to move discussions forward, the authors aimed at reviewing understandings of the spirit of sport in the conceptual literature. The main databases were searched using relevant (...) keywords. After the inclusion and exclusion criteria were applied, eighteen publications were included in the review. The most striking result to emerge from the data is the multivalence of the concept of spirit of sport. Our thematic analysis generated the contestability of the spirit of sport as the predominant theme in the conceptual literature. There is a need for empirical research to generate data about perspectives on the spirit of sport from other stakeholders especially those of the athletes themselves. (shrink)

BackgroundThe landscape of clinical research has evolved over the past decade. With technological advances, the practice of using electronic informed consent (eIC) has emerged. However, a number of challenges hinder the successful and widespread deployment of eIC in clinical research. Therefore, we aimed to investigate the views of various stakeholders on the potential advantages and challenges of eIC.MethodsSemi-structured interviews were conducted with 39 participants from 5 stakeholder groups from across 11 European countries. The stakeholder groups included physicians, patient organization representatives, (...) regulator representatives, ethics committee members, and pharmaceutical industry representatives, and all were involved in clinical research. Interviews were analyzed using the framework method.ResultsInterviewees identified that a powerful feature of eIC is its personalized approach as it may increase participant empowerment. However, they identified several ethical and practical challenges, such as ensuring research participants are not overloaded with information and offering the same options to research participants who would prefer a paper-based informed consent rather than eIC. According to the interviewees, eIC has the potential to establish efficient long-term interactions between the research participants and the research team in order to keep the participants informed during and after the study. Interviewees emphasized that a personal interaction with the research team is of utmost importance and this cannot be replaced by an electronic platform. In addition, interviewees across the stakeholder groups supported the idea of having a harmonized eIC approach across the European Member States.ConclusionsInterviewees reported a range of design and implementation challenges which needs to be overcome to foster innovation in informing research participants and obtaining their consent electronically. It was considered important that the implementation of eIC runs alongside the face-to-face contact between research participants and the research team. Moreover, interviewees expect that eIC could offer the opportunity to enable a personalized approach and to strengthen continuous communication over time. If successfully implemented, eIC may facilitate the engagement of research participants in clinical research. (shrink)

The actual rise of empirical contributions in bioethics questions – at a fundamental level – the place bioethics will reserve for empirical approaches in its field. This article aims to discuss the relationship between empirical research and normative evaluations and to apply this to the use of the concept of dignity in end-of-life research.It describes five possible ways in which empirical research can be related to normative ethics: prescriptive applied ethics, theorist ethics, critical applied ethics, particularist ethics and integrated empirical (...) ethics. In this article, we elaborate on the critical applied ethics perspective and present it as a five stage process comprising a) the determination of the problem, b) the description of the problem, c) the study of effects and alternatives, d) normative weighing and e) the evaluation of the effects of a decision. At each stage, we explore the perspective from both the empirical and the normative poles and apply it to the case of dignity in end-of-life decisions. (shrink)

The Roman Catholic theological approach to euthanasia is radically prohibitive. The main theological argument for this prohibition is the so-called “stewardship argument”: Christians cannot escape accounting to God for stewardship of the bodies given them on earth. This contribution presents an alternative approach based on European existentialist and philosophical traditions. The suggestion is that exploring the fullness of our relational responsibility is more apt for a pluralist – and even secular – debate on the legitimacy of euthanasia.

Medical ethics enjoyed a remarkable degree of continuity from the days of Hippocrates until its long-standing traditions began to be supplanted, or at least supplemented, around the middle of the twentieth century. Scientific, technological, and social developments during that time produced rapid changes in the biological sciences and in health care. These developments challenged many prevalent conceptions of the moral obligations of health professionals and society in meeting the needs of the sick and injured .The Anglo-American textbook of Beauchamp and (...) Childress became the referential work for the discipline of `bio-ethics'. The authors are convinced that a long history of ancient, medieval and modern health care reflection remains very disappointing from the perspective of contemporary biomedical ethics: “It shows how inadequately, and with what measure of insularity, problems of truthfulness, privacy, justice, communal responsibility and the like were framed in past centuries ”. They defend the four principles approach to biomedical ethics, an approach which somewhat disparagingly has been called principlism.The influence of their work has been so strong that bio-ethics seemed to become overwhelmed by the importance of their contribution. It even created a large separation between Anglo-American approaches in bio-ethics and the European-Continental approach . In any case, contemporary biomedical ethics incorporates theoretical conflicts of considerable complexity, and the diverse theories make it no easier.The personalist approach to biomedical ethics presents itself as a typical European reaction to the rapid changes in medicine and health care. Some call it, however, a kind of renewal of the old Thomistic approach, whereby the concept of `nature' has been replaced by the more dynamic concept of `person'. In that way personalism has been situated by many observers as a `person' centred natural law tradition which focuses on the rational nature of the human person as the moral norm of nature. This gives the impression that personalism is only a very `static' variant of the natural law approach.I would, however, defend the opinion that personalism offers a very dynamic and creative approach to the complexities of recent developments in biomedicine. In what follows, I will illustrate this by clarifying two basic dimensions of the integration of personalism in biomedical ethics: the personalist approach offers a relational foundation for medicine as a healing profession and it presents an ethical framework for the integration of new developments in medicine. First, however, I would like to situate the importance of this theoretical reflection for medical ethics. (shrink)

As a cornerstone of public health, epidemiology has lately undergone substantial changes enabled by, among other factors, the use of biobank infrastructures. In biobank-related research, the return of results to participants constitutes an important and complex ethical question. In this study, we qualitatively investigated how individuals perceive the results returned following their participation in cohort studies with biobanks. In our semi-structured interviews with 31 participants of two such German studies, we observed that some participants overestimate the nature of the personal (...) information they will receive from the study. Although this misestimation does not seem to jeopardize the validity of the consent provided at recruitment, it may still represent a threat for participants’ trust in research and thus their long-term commitment, crucial for such studies. We argue that such misestimation may have ethical consequences on the principles guiding the reflection on the return of results in biobank research, i.e. autonomy, beneficence, non-maleficence and reciprocity. We suggest that shifting from the idea of directly benefiting participants through the return of research results could help focusing on benefiting society as a whole, thereby increasing research trustworthiness of population-based studies using biobanks. (shrink)

Although Next Generation Sequencing (NGS) has increased our ability to test and diagnose, its results are often not clear-cut and require a complex interpretation and negotiation process by both healthcare professionals and patients involved. In this paper, we explore how diagnoses identified through NGS are socially shaped under influence of the broader social context. Using an analytical framework stemming from the sociology of health and illness and science and technology studies, with a focus on the construction of diagnosis and the (...) role of uncertainty in medicine, we analyze the existing corpus of literature on NGS diagnostic practices. We show how in this early implementation phase of NGS, in which standardization efforts are not yet solidified, the boundary struggles around diagnoses obtained through NGS are particularly visible. We discuss the different steps in the diagnosis shaping process and what it subsequently entails to give and a receive a diagnosis using NGS. (shrink)

Paul T. Schotsmans; The Ethical Claim of a Dying Brother, Christian bioethics: Non-Ecumenical Studies in Medical Morality, Volume 9, Issue 2-3, 1 January 2003.

Contact investigation is an evidence-based intervention of multidrug-resistant tuberculosis (MDR-TB) to protect public health by interrupting the chain of transmission. In pursuit of contact investigation, patients’ MDR-TB status has to be disclosed to third parties (to the minimum necessary) for tracing the contacts. Nevertheless, disclosure to third parties often unintentionally leads the MDR-TB patients suffered from social discrimination and stigma. For this reason, patients are less inclined to reveal their MDR-TB status and becomes a significant issue in contact investigation. This (...) issue certainly turns into a negative impact on the public interest. Tension between keeping MDR-TB status confidential and safeguarding public health arises in relation to this issue. Regarding MDR-TB management, patient compliance with treatment and contact investigation are equally important. Patients might fail to comply with anti-TB therapy and be reluctant to seek healthcare due to disclosure concerns. In order to have treatment adherence, MDRTB patients should not live through social discrimination and stigma arising from disclosure and TB team has a duty to support them as a mean of reciprocity. However, implementation of contact investigation as a public health policy can still be challenging even with promising reciprocal support to the patients because MDR-TB patients are living in different contexts and situations. There can be no straight forward settlement but an appropriate justification for each distinct context is needed to strike a balance between individual confidentiality and public interest. (shrink)

Background While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients.Methods We conducted semi-structured interviews with 31 GHPs across Europe, Australia (...) and Canada to identify some of these challenges.Results Our results show that GHPs find it difficult to prepare patients to receive results because a vast amount of information is required to fully inform patients about VUS and UF. GHPs also struggle to engage patients – many of whom may be focused on ending their ‘diagnostic odyssey’ – in the informed consent process in a meaningful way. Thus, some questioned how ‘informed’ patients actually are when they agree to undergo clinical genomic sequencing.Conclusions These findings suggest a tension remains between sufficient information provision at the risk of overwhelming the patient and imparting less information at the risk of uninformed decision-making. We suggest that a shift away from ‘fully informed consent’ toward an approach aimed at realizing, as far as possible, the underlying goals that informed consent is meant to promote. (shrink)

Background While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients.Methods We conducted semi-structured interviews with 31 GHPs across Europe, Australia (...) and Canada to identify some of these challenges.Results Our results show that GHPs find it difficult to prepare patients to receive results because a vast amount of information is required to fully inform patients about VUS and UF. GHPs also struggle to engage patients – many of whom may be focused on ending their ‘diagnostic odyssey’ – in the informed consent process in a meaningful way. Thus, some questioned how ‘informed’ patients actually are when they agree to undergo clinical genomic sequencing.Conclusions These findings suggest a tension remains between sufficient information provision at the risk of overwhelming the patient and imparting less information at the risk of uninformed decision-making. We suggest that a shift away from ‘fully informed consent’ toward an approach aimed at realizing, as far as possible, the underlying goals that informed consent is meant to promote. (shrink)

Church-ethical statements in the context of contemporary medicine often give rise to a lot of controversy and commotion. Just think of the debates about medically assisted reproduction, genetics, prenatal diagnosis, stem cell research, organ donation, palliative sedation or euthanasia. Paul Schotsmans notes that many of these statements are inspired by a well-defined ethical model, specifically the act-deontological model. He argues that a more dynamic ethical model (personalism based on Western-European value-systems) creates space for a humane integration of the (...) new medical possibilities. With this book, he seeks to indicate how Christian faith can be an inspiration for an open-minded, humane and dynamic health care. (shrink)