Fetal medicine specialist experiences of providing a new service of termination of pregnancy for fatal fetal anomaly: a qualitative study.

OBJECTIVE: To explore fetal medicine specialists' experiences of caring for parents following a diagnosis of fatal fetal anomaly (FFA) during the implementation of termination of pregnancy (TOP) for FFA for the first time. DESIGN: Qualitative study. SETTING: Fetal medicine units in the Republic of Ireland. POPULATION: Ten fetal medicine specialists from five of the six fetal medicine units. METHODS: nvivo 12 assisted in the thematic analysis of semi-structured in-depth face-to-face interviews. MAIN OUTCOME MEASURES: Fetal medicine specialists' experiences of prenatal diagnosis and holistic management of pregnancies complicated by FFA. RESULTS: Four themes were identified: 'not fatal enough', 'interactions with colleagues', 'supporting pregnant women' and 'internal conflict and emotional challenges'. Fetal medicine specialists feared getting an FFA diagnosis incorrect because of media scrutiny and criminal liability associated with the TOP for FFA legislation. Challenges with the ambiguous and 'restrictive' legislation were identified that 'ostracised' severe anomalies. Teamwork was essential to facilitate opportunities for learning and peer support; however, conflict with colleagues was experienced regarding the diagnosis of FFA, the provision of feticide and palliative care to infants born alive following TOP for FFA. Participants reported challenges implementing TOP for FFA, including the absence of institutional support and 'stretched' resources. Fetal medicine specialists experienced internal conflict and a psychological burden providing TOP for FFA, but did so to 'provide full care for women'. CONCLUSIONS: Our study identified challenges regarding the suitability of the Irish legislation for TOP for FFA and its rapid introduction into clinical practice. It illustrates the importance of institutional and peer support, as well as the need for supportive management, in the provision of a new service. TWEETABLE ABSTRACT: The implementation of termination services for fatal fetal anomaly is complex and requires institutional support.

Prenatal screening, reproductive choice, and public health.

One widely held view of prenatal screening (PNS) is that its foremost aim is, or should be, to enable reproductive choice; this is the Pure Choice view. The article critiques this position by comparing it with an alternative: Public Health Pluralism. It is argued that there are good reasons to prefer the latter, including the following. (1) Public Health Pluralism does not, as is often supposed, render PNS more vulnerable to eugenics-objections. (2) The Pure Choice view, if followed through to its logical conclusions, may have unpalatable implications, such as extending choice well beyond health screening. (3) Any sensible version of Public Health Pluralism will be capable of taking on board the moral seriousness of abortion and will advocate, where practicable, alternative means of reducing the prevalence of disease and disability. (4) Public Health Pluralism is at least as well-equipped as the Pure Choice model to deal with autonomy and consent issues.

A new ethical landscape of prenatal testing: individualizing choice to serve autonomy and promote public health: a radical proposal.

A new landscape of prenatal testing (PNT) is presently developing, including new techniques for risk-reducing, non-invasive sampling of foetal DNA and drastically enhanced possibilities of what may be rapidly and precisely analysed, surrounded by a growing commercial genetic testing industry and a general trend of individualization in healthcare policies. This article applies a set of established ethical notions from past debates on PNT for analysing PNT screening-programmes in this new situation. While some basic challenges of PNT stay untouched, the new development supports a radical individualization of how PNT screening is organized. This reformation is, at the same time, difficult to reconcile with responsible spending of resources in a publicly funded healthcare context. Thus, while the ethical imperative of individualization holds and applies to PNT, the new landscape of PNT provides reasons to start rolling back the type of mass-screening programmes currently established in many countries. Instead, more limited offers are suggested, based on considerations of severity of conditions and optimized to simultaneously serve reproductive autonomy and public health within an acceptable frame of priorities. The new landscape of PNT furthermore underscores the ethical importance of supporting and including people with disabilities. For the very same reason, no ban on what may be analysed using PNT in the new landscape should be applied, although private offers must, of course, conform to strict requirements of respecting reproductive autonomy and what that means in terms of counselling.

Prenatal screening: an ethical agenda for the near future.

Prenatal screening for foetal abnormalities such as Down's syndrome differs from other forms of population screening in that the usual aim of achieving health gains through treatment or prevention does not seem to apply. This type of screening leads to no other options but the choice between continuing or terminating the pregnancy and can only be morally justified if its aim is to provide meaningful options for reproductive choice to pregnant women and their partners. However, this aim should not be understood as maximizing reproductive choice per se. Only if understood as allowing prospective parents to avoid suffering related to living with (a child with) serious disorders and handicaps can prenatal screening be a publicly or collectively funded programme. The alternative of moving prenatal testing outside the healthcare system into the private sector is problematic, as it makes these tests accessible only to those who can afford to pay for it. New developments in prenatal screening will have to be assessed in terms of whether and to what extent they either contribute to or undermine the stated aim of providing meaningful options for reproductive choice. In the light of this criterion, this article discusses the introduction of the new non-invasive prenatal test (NIPT), the tendency to widen the scope of follow-up testing, as well as the possible future scenarios of genome-wide screening and 'prenatal personalised medicine'. The article ends with recommendations for further debate, research and analysis.

[Words before actions- the significance of counselling in the Praena-Test era]. / Worte vor Taten - der Stellenwert der Beratung in der Ära des Praena-Tests.

Due to new offers in prenatal diagnostics pregnant women are forced to make choices. In Switzerland physicians are obliged to inform previous to prenatal tests and to obtain informed consent. Considering the complexity of this information and the consequences of a positive result, counselling is challenging, especially in an intercultural context. A questionnaire-based study compared information processing, test interpretation and emotional response of pregnant women from Switzerland and adjacent countries with Turkish women. Knowledge of the latter was significantly lower and they found counselling more unsettling, but their acceptance of prenatal tests was significantly higher. An empathetic approach and the right words are decisive, and counselling will even gain importance when considering the increase in options patients are confronted with.

Les nouvelles offres dans le diagnostic prénatal contraignent les femmes enceintes à faire des choix. En Suisse, les médecins ont le devoir d'informer au sujet des tests prénataux et en obtenir le consentement. Compte tenu de la complexité, ce conseil est exigeant, avant tout dans un contexte interculturel. Une étude basée sur des questionnaires a comparé les connaissances et les réactions émotionnelles des femmes enceintes de Suisse avec des femmes venant de la Turquie. Cela a montré que les connaissances de ces dernières étaient moindres et qu'elles se sentaient plus insécurisées tout en montrant une acceptation significativement plus élevée relativement au diagnostic prénatal. Une attitude empathique et des mots bien choisis sont décisifs et leur importance va encore prendre de l'ampleur avec l'augmentation des options à disposition des patientes.

Controlling Sickle Cell Disease in Ghana--ethics and options.

Sickle Cell Disease (SCD) is a significant public health burden in Ghana. Recent studies indicate that 2% of Ghanaian newborns are affected by SCD; one in three Ghanaians has the hemoglobin S and/or C gene. As a means of controlling the disease, some authorities have recommended prenatal diagnosis (PND) and selective abortion. In the current era, SCD has a good prognosis and fairly reasonable quality of life. Advances in bone marrow transplantation have shown the disease is curable in selected patients. PND and selective abortion therefore raises a myriad of ethical dilemmas which are considered in this review. In the light of the demonstration of improved prognosis in recent times, PND and selective abortion appears to be applying capital punishment to the unborn child for "crimes" only the parents can be responsible for. In this review, we recommend control of SCD on three levels--preconception genetic testing and strategic reproductive choices, PND and education for carrier parents, and holistic management of persons with SCD. We emphasize the critical importance of self-management, especially self-awareness, in assuring a good quality of life for persons with SCD. We believe such an approach is cost-effective, and consistent with sound ethical principles and good conscience.

[Prenatal diagnostics and information to parents]. / Diagnósticos prenatales: información a los padres.

New screening and prenatal diagnostic techniques, require the Medicine professionals have a clear purpose for its realization, since the intention determined the act is determined in accordance with the values of the Medicine or becoming an event eugenics act by means of "therapeutic abortion". The Family Physician information about these techniques to pregnant women must be based on the status of science, facilitating the risk of loss fetal and false data positive informing of therapeutic possibilities and facilitating respect for the pregnant woman's decision of non-fulfillment of the screening. The information update according to the state of science, should be provided in writing and the informed consent of the patient should be obtained by all professionals involved in testing, with respect shows for the autonomy of the patient.

Ethical issues and policy analysis for genetic testing: Huntington's disease as a paradigm for diseases with a late onset.

This paper discusses the main ethical issues that arise when testing for genetic diseases with a late adult onset, such as Huntington's disease, take place. It is imperative to study genetic testing for HD and similar diseases because of the potential to influence future medical advances and the growing number of individuals who are considered pre-symptomatic. The main ethical issues are consent and privacy, prenatal testing and its implications, in addition to insurance discrimination. These issues are viewed from the perspective of genetic counselors, patients, the families of patients, and insurance companies. Policies put forth by the United States National Society of Genetic Counselors ("NSGC"), the Task Force on Genetic Testing, and the President's Council for Bioethics are also analyzed. Finally, new recommendations are proposed in order to ameliorate the ethical dilemmas encountered in genetic testing. These recommendations are largely based on existing policies and therefore involve amending current policies rather than revamping them.

Ethical decision-making in prenatal diagnosis and termination of pregnancy: a qualitative survey among physicians and midwives.

OBJECTIVES: This study was aimed at exploring the conflicts and ethical problems experienced by professionals involved in prenatal diagnosis and termination of pregnancy (TOP) in order to improve the understanding of decision-making processes and medical practices in the field of prenatal diagnosis. METHODS: Qualitative study with in-depth tape-recorded interviews conducted in three tertiary care maternity units in France, between May 1999 and March 2000. All full-time obstetricians and half of the full-time midwives were contacted. Seventeen obstetricians and 30 midwives participated (three refusals, five missing). Interviews were transcribed and analysed successively by two different researchers. RESULTS: All respondents stated that prenatal diagnosis and TOP raised important ethical dilemmas, the most frequent being request for abortion in case of minor anomalies. They pointed out the inability of our society to appropriately care for disabled children and the risk of eugenic pressures. The decisions and practices in prenatal diagnosis should be debated throughout society. All respondents reported that their unit did not have protocols for deciding when a TOP was justifiable. The transmission of information to the women appeared to be a problematic area. Moral conflicts and emotional distress were frequently expressed, especially by midwives who mentioned the need for more discussions and support groups in their department. CONCLUSION: Health professionals involved in prenatal diagnosis face complex ethical dilemmas which raise important personal conflicts. A need for more resources for counselling women and for open debate about the consequences of the current practices clearly emerged.