Bobbie Farsides

Too many choices? Hospital and community staff reflect on the future of prenatal screening

Promoting informed choice is commonly recognised as the chief purpose and benefit of prenatal screening, its very presence being viewed as a key way in which the process can be distanced from eugenics. As the number of conditions and features which can potentially be screened for rises, dilemmas about how to achieve informed choice can only increase. Seventy hospital and community staff working in or attached to two English hospitals were interviewed individually on topics which included their views on genetic developments and moral beliefs and values, and how these affected their daily work. The majority then took part in small discussion groups led by an ethicist. The research identified a paradox. On the one hand, participants recognised the centrality of informed choice to prenatal screening, although they had many doubts about whether it could be achieved. On the other hand, most saw the expansion of screening, which might further compromise informed choice, as an inevitable and inexorable process over which they had little, if any, control. This was despite the fact that many of them decided, managed or implemented prenatal screening policies within their hospitals. The paper explores the factors which staff themselves identified as responsible for this perceived inevitable expansion. It then discusses more generally how the expansion of medical technologies can appear as inexorable to those involved. Finally, the paper calls for more inclusive, integrated and collaborative debate and research around the whole area of prenatal screening. This is to ensure that as far as possible, the wider consequences and implications of any proposed expansion to prenatal screening-both the promises and the potential side-effects-are debated ahead of their implementation, and also to help ensure that public policy represents and serves contemporary society.

Aiming towards “moral equilibrium”: health care professionals’ views on working within the morally contested field of antenatal screening

Objective: To explore the ways in which health care practitioners working within the morally contested area of prenatal screening balance their professional and private moral values. Design: Qualitative study incorporating semistructured interviews with health practitioners followed by multidisciplinary discussion groups led by a health care ethicist. Setting: Inner city teaching hospital and district general hospital situated in South East England. Participants: Seventy practitioners whose work relates directly or indirectly to perinatal care. Results: Practitioners managed the interface between their professional and private moral values in a variety of ways. Two key categories emerged: “tolerators”, and “facilitators”. The majority of practitioners fell into the “facilitator” category. Many “facilitators” felt comfortable with the prevailing ethos within their unit, and appeared unlikely to feel challenged unless the ethos was radically challenged. For others, the separation of personal and professional moral values was a daily struggle. In the “tolerator” group, some practitioners sought to influence the service offered directly, whereas others placed limits on how they themselves would contribute to practices they considered immoral. Conclusions: The “official” commitment to non-directiveness does not encourage open debate between professionals working in morally contested fields. It is important that practical means can be found to support practitioners and encourage debate. Otherwise, it is argued, these fields may come to be staffed by people with homogeneous moral views. This lack of diversity could lead to a lack of critical analysis and debate among staff about the ethos and standards of care within their unit.

Conflicting perceptions of the fetus: Person, patient, 'nobody', commodity?

Different constructions of the fetus lie at the centre of reproductive, abortion and disability politics. Recent developments mean that, within the same hospital, a fetus may be perceived in contrasting and potentially conflicting ways. It is also argued that the status given to the fetus is directly relevant to the status given to pregnant women. During group discussions facilitated by an ethicist, health-care staff highlighted various perceptions of the fetus which included: person; patient; nobody; commodity. Perhaps not surprisingly in view of the current legal situation, staff tended to claim that it is usually the pregnant woman who decides how her fetus will be constructed, and the practitioner who responds to this. However, various ways in which practitioners might influence womens perceptions of their fetus are highlighted, as are some ways in which the perceptions of staff might be influenced. This paper illustrates how sensitive health-care staff will need to be if they are indeed to respond to, rather than shape, womens constructions of their fetus.

Is there such a thing as a life not worth living

This is the last in a series of five articles nnMeasuring quality of life has an important place in health care, but what about when life has no quality? Or worse? From an ethical perspective there are two areas in which these issues have been extensively explored: termination of pregnancy and end of life decision making for competent and non-competent adults. One way in which quality of life is sometimes introduced to decision making is through the concept of “a life not worth living.” The seemingly logical conclusion is that lives not worth living may not be worth creating or saving. This final paper in the series debates the problems—both the practical difficulties of measurement and ethical issues—associated with measuring quality of life in situations in which lives have been judged to have no quality.nn#### Summary pointsnnThere are no quality of life measures that reliably identify patients who feel that life is not worth livingnnBasing management decisions on such measures requires extreme caution because of the fluctuating nature of patients valuations of life and their desire for deathnnPatients who are dying may find some quality in life, even when their quality of life as assessed by current measures is abysmalnnThe use of proxies to determine whether a life is worth living is problematic because of the possible disparity between an observers assessment and the patients own valuationnnBoth patients and their proxies have identified health states that they consider to be worse than deathnnIf a pregnancy is terminated because the fetus has an abnormality we will never know for sure whether the life in question would have been worth living. However, we allow lives to be terminated if they are predicted to be of low (or maybe only slightly diminished) quality. We base these decisions not only, …

'Drawing the line' in prenatal screening and testing: Health practitioners' discussions

As the number of fetal conditions which can potentially be screened and tested for rises, the question of whether limits should be set around prenatal screening is a timely one. There are many areas of disagreement as to whether a line can, or should be drawn, about what constitutes a severe handicap, and about who should be involved in making such decisions. This paper reports on how health practitioners involved in prenatal screening discussed these questions in multidisciplinary groups facilitated by an ethicist. It explores the difficulties practitioners expressed about drawing lines on behalf of others, and then looks at who practitioners felt should be involved in drawing lines. Finally, using sex selection as an exemplar, the paper explores how practitioners discussed the possibility of selective terminations for fetal sex on social grounds. Although not impossible, it seems that reaching a public or professional agreement on prenatal screening policies will be difficult. With the current emphasis on informed choice, it is of paramount importance that there is no pressure to follow a particular line of action. This must rely in part on the provision of accurate information devised and conveyed by practitioners and people with broad, practical experience of conditions being screened for.

Practitioners’ Views about Equity within Prenatal Services

The British National Health Service (NHS) is based on principles of equal access, treatment and outcomes.This article reviews health professionals’ aims to provide equitable prenatal services and their views on whether women could be equal in their access to services, understanding during choice-making, and satisfaction about their care. Inequalities which compromise equity, conflicting meanings of equity, and the contribution of in-hospital ethics seminars to ethical health services are considered. Qualitative research, combining sociological and philosophical methods, investigated the experiences of health care staff attempting to provide equitable services and their practical and ethical problems. A total of 70 staff at a teaching hospital and a district general hospital took part in semi-structured interviews, followed by 11 innovative in-hospital ethics seminars based on themes derived from the interviews.The 56 seminar participants usually began with clear statements of their equitable aims, but, encouraged by the health care ethicist, they went on to discuss their many concerns about obstacles which complicated the achievement of these aims. The sociological-ethics seminars provided unique opportunities for multi-disciplinary discussion of these inequalities and their impact on equitable intentions in health care. Analysis of the contradictions revealed during the seminars is guided by sociological theories that seek to explain the persistence of inequalities in health, and how NHS policies appear to perpetuate and increase them, despite practitioners’ stated intentions to promote equality.