BACKGROUND In recent years, changes in attitudes towards (non-)disclosure of donor conception to offspring and/or others have been observed. Studies have started to identify possible factors that contribute to these changes that are relevant for clinics, counsellors and policy-makers in their approach to the disclosure process. The aim of this systematic review was to integrate the existing knowledge on factors that influence the disclosure decision-making process of donor conception to offspring and/or others in heterosexual couples, and to discuss future trends and concerns. METHODS A bibliographic search of English, French, German and Dutch language publications of five computerized databases was undertaken from January 1980 to March 2012. A Cochrane Database systematic review approach was applied. RESULTS A total of 43 studies met the inclusion criteria, and these represented 36 study populations. The review shows that the parents' disclosure decision-making process is influenced by a myriad of intrapersonal, interpersonal, social and family life cycle features. These influences were not necessarily independent but rather were interwoven and overlapping. Theoretical frameworks have not yet been used to explain how the different factors influenced disclosure. Methodological limitations of the original publications (lack of information, several factors included in one study, descriptive character of studies) and this review (multiple factors that may interact) which hindered integration of the findings are outlined. CONCLUSIONS Intrapersonal, interpersonal, social and family life cycle factors influence the parents' disclosure decision-making process. The review has demonstrated the need for the development of a theoretical model to enable integration of the identified influencing factors. Further research is needed on the role of stigma, confrontation efficacy, extended family, donor siblings' characteristics, cross-border treatment, culture, gender and socio-educational factors.

Aims: To explore couples' experiences in the preconception phase of infertility treatment with donor gametes and how this may influence the disclosure process to the offspring and/or others. Methods: In-depth interviews with 10 recipient couples were analyzed using a grounded theory approach. Results: In the context of their infertility and a culture in which definitions of gender and family are fundamentally biologically based, participants reconsidered the significance and meaning of genetics, and social connectedness in family-building and parenthood. When couples emphasized the similarities with the biologically based definitions of parenthood and family, the question of disclosing the donor conception to the offspring seemed less relevant. When couples adapted their view on families and parenthood to an alternative family formation, long-term consequences became more relevant, including the disclosure question. Support from others was needed to manage the challenges of this stage, but this could be in conflict with their decision of non-disclosing the donor conception to the potential offspring. Conclusions: This study highlights the importance of couples' experiences in the preconception phase for their disclosure process. The treatment of infertility and a future-oriented, family-building approach should be addressed in a fertility program with donor gametes and valued as complementary.

Objectives: The objective of this research is to analyse the evolution and nature of published empirical research in the fields of medical ethics and bioethics. Design: 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, andTheoretical Medicine and Bioethics). Results: In total, 4029 articles published between 1990 and 2003 were retrieved from the journals studied. Over this period, 435 (10.8%) studies used an empirical design. The highest percentage of empirical research articles appeared in Nursing Ethics (n=145, 39.5%), followed by the Journal of Medical Ethics (n=128, 16.8%) and the Journal of Clinical Ethics (n=93, 15.4%). These three journals account for 84.1% of all empirical research in bioethics published in this period. The results of the χ2 test for two independent samples for the entire dataset indicate that the period 1997–2003 presented a higher number of empirical studies (n=309) than did the period 1990–1996 (n=126). This increase is statistically significant (χ2=49.0264, p<.0001). Most empirical studies employed a quantitative paradigm (64.6%, n=281). The main topic of research was prolongation of life and euthanasia (n=68). Conclusions: We conclude that the proportion of empirical research in the nine journals increased steadily from 5.4% in 1990 to 15.4% in 2003. It is likely that the importance of empirical methods in medical ethics and bioethics will continue to increase.

The recent emergence of evidence-based medicine (EBM) presents medical ethics with the challenge of analyzing what is the current best medical evidence in ethical decision making. This article concludes that the use of the best available, most recently published research findings is a primary moral obligation. However, this does not automatically mean that the use of these research findings will lead to better ethical decision making. Research data can be distorted by methodological failings in the design and reporting of experiments, or by technical and commercial bias. Moreover, the introduction of norms, values, principles and ethical theories can lead to other choices than those proposed by empirical research findings. Ethical decision making must be informed and legitimated by the best available medical research. Nevertheless, ethical decision making is still primarily a choice based on values and norms.

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 in 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.

source of corticotropin and determine its cause.

The objective of this article is to review the attitudes of the different stakeholders (minors, healthcare professionals, parents and relatives of affected individuals) towards carrier testing in minors. The databases Pubmed, Google Scholar, Psychinfo, Biological Abstracts, Francis, Anthropological Index online, Web of Science, and Sociological Abstracts were searched using key words for the period 1990-2004. Studies were included if they were published in a peer reviewed journal in English and described the attitudes of minors, parents or healthcare professionals towards carrier testing in minors in a family context. The results were presented in a summary form. In total 20 relevant studies were retrieved (2 studies reported the attitudes of two stakeholders). Only one study reported the attitudes of adolescents, two studies reported the attitudes of adults who had undergone carrier testing in childhood. In total six studies have been retrieved discussing the parental attitudes towards carrier testing in their children. Over all studies, most parents showed interest in detecting their children's carrier status and responded they wanted their child tested before the age of majority: some parents even before 12 years. Eight studies were retrieved that reported the attitudes of relatives of affected individuals. Most were in favor of carrier testing before 18 years. The studies retrieved suggest that most parents are interested in the carrier status of their children and want their children to be tested before they reach legal majority (and some even in childhood). This can lead to tensions between parents and healthcare professionals regarding carrier testing in minors. Guidelines of healthcare professionals advise to defer carrier testing on the grounds that children should be able to decide for themselves later in life to request a carrier test or not.

Wie inzicht wil verwerven in de recente geschiedenis van de bio-ethiek, neemt best even het boek The Birth of Bioethics1 van Albert Jonsen ter hand. Deze Amerikaanse auteur situeert het ontstaan van de bio-ethiek als nieuwe discipline in de laatste vier decennia tegen de achtergrond van verschillende studiedagen, congressen, debatten en publicaties over de recente ontdekkingen en ontwikkelingen in het medische en biologische veld. Hij omschrijft het begin van de bio-ethiek als een interdisciplinair overleg dat zowel filosofen, theologen, artsen, juristen en sociale wetenschappers samenbracht om na te denken over de invulling van goede geneeskunde. Jonsen beschrijft hoe theologie en filosofie – ondanks de veelheid aan disciplines die kleur gaven aan de beginjaren van de bio-ethiek – de beginnende discipline duidelijk domineerden en hoe de sociale wetenschappen2 weinig of niet betrokken waren in de geschiedenis van de discipline tot nog toe. Ook andere auteurs3 merkten op dat er weinig of geen uitwisselingen gebeurden tussen (bio)ethici en sociale wetenschappers en dat bijgevolg beide onderzoeksvelden elkaars onderzoeksmethoden en –resultaten weinig of niet kenden.

Wie inzicht wil verwerven in de recente geschiedenis van de bio-ethiek, neemt best even het boek The Birth of Bioethics1 van Albert Jonsen ter hand. Deze Amerikaanse auteur situeert het ontstaan van de bio-ethiek als nieuwe discipline in de laatste vier decennia tegen de achtergrond van verschillende studiedagen, congressen, debatten en publicaties over de recente ontdekkingen en ontwikkelingen in het medische en biologische veld. Hij omschrijft het begin van de bio-ethiek als een interdisciplinair overleg dat zowel filosofen, theologen, artsen, juristen en sociale wetenschappers samenbracht om na te denken over de invulling van goede geneeskunde. Jonsen beschrijft hoe theologie en filosofie – ondanks de veelheid aan disciplines die kleur gaven aan de beginjaren van de bio-ethiek – de beginnende discipline duidelijk domineerden en hoe de sociale wetenschappen2 weinig of niet betrokken waren in de geschiedenis van de discipline tot nog toe. Ook andere auteurs3 merkten op dat er weinig of geen uitwisselingen gebeurden tussen (bio)ethici en sociale wetenschappers en dat bijgevolg beide onderzoeksvelden elkaars onderzoeksmethoden en –resultaten weinig of niet kenden.

Certain events settle themselves in the collective memory of humankind where they keep functioning for decades as points of reference for future generations. The announcement of the successful cloning of Dolly was such an event. Every one of us will remember this thought-provoking occasion or will, at least, be confronted with the extended media coverage of this breakthrough in medical science. Immediately, world leaders reacted and the question was raised how long it would take before the shepherd was cloned. More important is the sequel to this medical breakthrough: the successful Dolly experiment led to the possibility of human embryonic and adult stem cell research. In 2000, the Pontifical Academy for Life took a position on this additional and innovative research. At the same time, understanding these technological innovations takes a lot of time as a result of the immense scientific complexity of these new technologies. In this article, we want to clarify the technological possibilities as well as the moral, theological and ethical issues involved. To some, it seems that humans usurped the Divine Creator's place and, by doing this, crossed a border. To others, this medical breakthrough is in line with previous reproductive technological innovations (the birth of Louisa Brown, the first test-tube baby was for some already one step too far but this has not compromised the proliferation of in vitro fertilization).

BACKGROUND:The best care and management of patients in persistent vegetative state (PVS) has been the subject of sustained moral and legal debate for a number of years. However, the views of specialist doctors in Belgium involved in the care for patients in PVS are largely unknown.METHODS:A postal questionnaire was sent to 403 members of Belgian Societies of Neurosurgeons, Neurologists and Rehabilitation Doctors. Their views were sought on various aspects of the management and care of PVS, focusing on the issue of the appropriateness of non-treatment and the withdrawal of artificial feeding.FINDINGS:Of the 208 doctors who completed the questionnaires (52%), 172 (83%) indicated that they had been involved in the management of a patient in PVS. 88% of the responding doctors thought it was sometimes appropriate not to treat acute infections or other life-threatening conditions in a PVS patient. Fifty-six percent considered it sometimes appropriate to withdraw artificial feeding. About three-quarter of physicians who considered both treatment-limiting decisions appropriate thought that such decisions could be considered within the first year of the patient being in PVS. Forty percent accorded a decisive influence to an advance directive and only a small number of doctors considered the influence of the patient's family in the decision to withdraw artificial feeding as decisive. Over 80% of the clinicians disagreed with the view that each decision about withdrawing artificial nutrition and hydration (ANH) should come before the courts.INTERPRETATION:Doctors in Belgium seem to be more reluctant to withdraw artificial feeding than not to treat acute infections or other life-threatening conditions in PVS. The reason for this difference appeared to be connected with the moral as well as with the clinical content of the decision. The broad variety of answers on the interval when the vegetative state is to be regarded as permanent and when treatment-limiting decisions are appropriate, could be due to the lack of official guidelines in Belgium. There seems however to be no consensus about a future policy in Belgium for making decisions about the withdrawal of ANH.

Summary Patients in a persistent vegetative state (PSV-patients) have permanently lost the function of the cerebral cortex. Prolonged survival depends only on basic nursing care and on adequate nutrition by nasogastric or gastrostomy tube. Since it is likely that such patients cannot experience distress, the burdens of prolonged survival fall on their families and friends and society. It seems legitimate to enquire about the duty to provide artificial nutrition and hydration to such patients. In a previous publication, the author essentially developed the relational approach. He also followed the conclusion of the American Academy of Neurology, accepting that these patients do not have the capacity to experience pain or suffering. For the reason that medicine does not really know what these patients experience, French neurologistis state that we should take into account that they could experience pain. This position, if valid, would fundamentally change the discussion on the withdrawal or withholding of nutrition and hydration. It leads the author in any case to a re-evaluation of his position. To withdraw life support, such as artificial nutrition and hydration, does—in his opinion—not amount to “abandonment” of the patient. When technical means of supporting life are withdrawn, the obligation to care for the patient continues during the dying process. This ethical re-appraisal is the result of a proportional value reflection in the light of the respect for the dignity of the dying patient.