It is widely agreed among health professionals that couples using donor insemination should be offered counselling on the topic of donor conception disclosure. However, it is clear from the literature that there has long been a lack of agreement about which counselling approach should be used in this case: a directive or a non-directive approach. In this paper we investigate which approach is ethically justifiable by balancing the two underlying principles of autonomy and beneficence. To overrule one principle (...) in favour of another, six conditions should be fulfilled. We analyse the arguments in favour of the beneficence principle, and consequently, a directive approach. This analysis shows that two conditions are not met; the principle of autonomy should not be overridden. Therefore, at this moment, a directive counselling approach on donor conception disclosure cannot be ethically justified. (shrink)

In this paper several reasons as to why framing issues should be of greater interest to both medical ethicists and healthcare professionals are suggested: firstly, framing can help in explaining health behaviours that can, from the medical perspective, appear perverse; secondly, framing provides a way of describing the internal structure of ethical arguments; and thirdly, an understanding of framing issues can help in identifying clinical practices, such as non-directive counselling, which may, inadvertently, be failing to meet their own stated (...) ethical aims. The effect of framing on how individuals interpret information and how healthcare choices are influenced by framing are described. Next, the role of framing in ethical discourse is discussed with specific reference to Judith Jarvis Thomson’s philosophical mind experiment about abortion and the violinist. Finally, the implications of this analysis are examined for the practice of non-directive counselling, which aims at communicating information in a neutral, value-free way and thereby protecting patient autonomy. (shrink)

The popular view of non-directive genetic counseling limits the counselor's role to providing information to clients and assisting families in making decisions in a morally neutral fashion. This view of non-directive genetic counseling is shown to be incomplete. A fuller understanding of what it means to respect autonomy shows that merely respecting client choices does not exhaust the duty. Moreover, the genetic counselor/client relationship should also be governed by the counselor's commitment to the principle of beneficience. When non-directive counseling is (...) reexamined in light of both these principles, it becomes clear that there are cases in which counselors should attempt to persuade clients to reconsider their decisions. Such attempts are consistent with non-directive counseling because, while respecting the clients' decision-making authority, they insure that clients act with full knowledge of the moral consequences of their decisions. (shrink)

When the complete human genomehas been sequenced, everyone of us will becomea potential candidate for genetic counselingand testing. Within a short period of timeeveryone will obtain his personal geneticpassport identifying deleterious andsusceptibility genes. With the availability ofpresymptomatic tests for late-onset disordersand the possibilities of prevention andtreatment, the conflict between directivenessand non-directiveness will dominate thecounseling setting. Despite general consent onproviding genetic information in a nondirectivefashion to preserve value neutrality andenhance client's autonomy, there is no acceptedcommon definition of what non-directivenessreally is or (...) ought to be. The article tries toelaborate some aspects which might be fruitfuland clarifying in the complex issues involvedin the black box of genetic counseling. (shrink)

There is no consensus about the ethical ideal of genetic counselling and decision making. This paper reviews and discusses some of the most prominent ethical arguments that have been brought forward against the non-directiveness principle (NDP), which has been the ethical gold standard for a long time. These arguments can be classed in four categories: (i) NDP can be against the best interests of the individuals concerned; (ii) NDP has ideological elements that do not adequately represent the counselling (...) ethos; (iii) NDP was historically a defensive tool that protected the interests of geneticists against social criticism and against litigation; (iv) NDP falsely assumes individual responsibility and hides the shared responsibility of other social actors. The paper argues that a serious understanding of moral space, which people need in order to make ‘their own’ decisions, leads to a necessarily relational concept of agency. The positive counterpart of NDP is to allow a space for agency. Allowing agency implies offering the kind of support that the decision-making person really needs. To make a good decision about personal genetics implies being empowered to act as a contextually sensitive person who is aware of relationships and corresponding responsibilities. (shrink)

Doctors hold coexisting ethical duties to avoid causing deliberate harm to their patients (non-maleficence), to act in patients’ best interests (beneficence), to respect patients’ right to self-determination (autonomy) and to ensure that costs and benefits are fairly distributed among patients (justice). In the context of non-directed altruistic kidney donations (NDAKD), doctors’ duties of autonomy and justice are in tension with those of non-maleficence and beneficence. This article examines these competing duties across three scenarios in which general practitioners (GPs) could promote (...) NDAKD to healthy adults. In the first—when a healthy adult patient prompts the GP to discuss NDAKD—the GP is ethically obligated to counsel the patient about NDAKD to respect their autonomy, yet this does not constitute any form of promotion of NDAKD. In the remaining scenarios, healthy adult patients are unaware of the possibility of NDAKD. In the second, it is ethically permissible for GPs to indirectly raise awareness of NDAKD among healthy adults by displaying recruitment campaign material to non-specified groups of patients in their waiting rooms. In the third, it is ethically impermissible for GPs to directly promote NDAKD to individual healthy adults by raising the possibility of NDAKD with such individuals. The major counterarguments raised against this position are problems with kinds of counselling that fail to reach expected professional standards, rather than problems with the ethical claims made in this article. (shrink)

The World Health Organisation recently listed air pollution as the most significant threat to human health. Air pollution comprises particulate matter (PM), metals, black carbon and gases such as ozone (O3), nitrogen dioxide (NO2) and carbon monoxide (CO). In addition to respiratory and cardiovascular disease, PM exposure is linked with increased risk of neurodegeneration as well as neurodevelopmental impairments. Critically, studies suggest that PM crosses the placenta, making direct in utero exposure a reality. Rodent models reveal that neuroinflammation, neurotransmitter imbalance (...) and oxidative stress are triggered following gestational/early life exposure to PM, and may be exacerbated by concomitant mitochondrial dysfunction. Gestational PM exposure (potentiated by mitochondrial impairment in the metabolically active neonatal brain) not only impacts neurodevelopment but may sensitise the brain to subsequent cognitive impairment. Having reviewed this field, we conclude that strategies are urgently required to reduce exposure to PM during this sensitive developmental period. (shrink)

The Reign of Quantity gives a concise but comprehensive view of the present state of affairs in the world, as it appears from the point of view of the 'ancient wisdom', formerly common both to the East and to the West, but now almost entirely lost sight of. The author indicates with his fabled clarity and directness the precise nature of the modern deviation, and devotes special attention to the development of modern philosophy and science, and to the part played (...) by them, with their accompanying notions of progress and evolution, in the formation of the industrial and democratic society which we now regard as 'normal'. Guénon sees history as a descent from Form (or Quality) toward Matter (or Quantity); but after the Reign of Quantity-modern materialism and the 'rise of the masses'-Guénon predicts a reign of 'inverted quality' just before the end of the age: the triumph of the 'counter-initiation', the kingdom of Antichrist. This text is considered the magnum opus among Guénon's texts of civilizational criticism, as is Symbols of Sacred Science among his studies on symbols and cosmology, and Man and His Becoming according to the Vedanta among his more purely metaphysical works. (shrink)

This chapter contains sections titled: Information Management: Confidentiality, Autonomy and Non‐Directiveness Predictive Genetic Testing Childhood Genetic Testing Genetic Screening Informed Consent to Screening Newborn Screening Carrier Screening Prenatal Screening Susceptibility Screening Further Information Management Goals of Genetic Screening: Public Health vs Individual Choice Conclusion References Further reading.

Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental to (...) the practice of genetic counseling as guided by concerns of justice and equity. We proceed in two steps. First, we explain how informed consent is flawed as a practical concept. Second, we show how the inadequacy of informed consent illuminates the animating core of disability critiques of genetic counseling: the issue of ableism. We argue that the problem of ableism cannot be solved with informed consent because it is not merely a problem of information, but also of epistemic schemas. We suggest that what we call critically informed consent is better suited to move genetic counseling from being aware of the problem of ableism to becoming actively anti-ableist. (shrink)

Pre‐abortion counselling may play a key role in abortion seekers’ understanding of their decision to terminate a pregnancy and the subsequent emotions that they feel. In this paper, we report on a study conducted in the Eastern Cape province of South Africa concerning womxn's experiences of the pre‐abortion counselling offered as part of the implementation of the Choice of Termination Act that governs the provision of legal abortion in the country. Using a narrative‐discursive lens, the analysis revealed four (...) micro‐narratives in which participants appreciated non‐directive and empathic counselling, as well as being provided with information. They also indicated that the counselling was upsetting and hurtful, particularly when providers drew on the awfulisation of abortion discourse to suggest that abortion leads to terrible consequences, and foetal personhood discourse to intimate that terminating the pregnancy is wrong and other alternatives (adoption, parenting) are better. The connection between these broadly positive and negative responses may lie in the dominance of anti‐abortion discourses coupled with the powerful positioning of healthcare providers as experts. The attendant disempowerment of clients within the health clinic setting may constrain pregnant people's ability to question such ‘expert’ information. The implications for feminist client‐centred pre‐abortion counselling are discussed. (shrink)

The paper presents findings from an ethnography of dysmorphology, a specialism in genetic medicine, to explore genetic counselling as a process through which parents ‘become informed.’ Current professional and policy debate over the use of genetic technology in medicine emphasises the need for informed choice making, and for genetic services that provide parents with what is referred to as ‘non-directive genetic counselling.’ In the paper the process of becoming informed is shown to be very specific and to have (...) its own effects. Specifically, genetics is performed in dysmorphology as a space of ambiguity and uncertainty. In addition, parents are engaged by the clinic as participants in the very processes through which their child, and perhaps their family, are clinically classified. The paper examines the effects of parents’ immersion in this clinical space of deferral to suggest how the need for reproductive choice, and calculation, is predicated upon clinical processes that shift parents between the experience of definition and uncertainty. The paper thus troubles simple stories about autonomous and informed choice, particularly reproductive choice, as icons of contemporary versions of what it is to be fully human. (shrink)

Background Non-invasive prenatal testing (NIPT), which can screen for aneuploidies such as trisomy 21, is being implemented in several public healthcare systems across Europe. Comprehensive communication and information have been highlighted in the literature as important elements in supporting women’s reproductive decision-making and addressing relevant ethical concerns such as routinisation. Countries such as England and France are adopting broadly similar implementation models, offering NIPT for pregnancies with high aneuploidy probability. However, we do not have a deeper understanding of how professionals’ (...) counselling values and practices may differ between these contexts. Methods In this paper, we explore how professionals in England and France support patient decision-making in the provision of NIPT and critically compare professional practices and values. We draw on data from semi-structured interviews with healthcare professionals. Results Both English and French professionals emphasised values relating to patient choice and consent. However, understandings and application of these values into the practice of NIPT provision differed. English interviewees placed a stronger emphasis on interpreting and describing the process of counselling patients and clinical care through a “principle” lens. Their focus was on non-directiveness, standardisation, and the healthcare professional as “decision-facilitator” for patients. French interviewees described their approach through a “procedural” lens. Their focus was on formal consent, information, and the healthcare professional as “information-giver”. Both English and French professionals indicated that insufficient resources were a key barrier in effectively translating their values into practice. Conclusion Our findings illustrate that supporting patient choice in the provision of NIPT may be held as an important value in common on a surface level, but can be understood and translated into practice in different ways. Our findings can guide further research and beneficially inform practice and policy around NIPT provision. (shrink)

This book provides an elaboration and evaluation of the dominant conceptions of genetic counseling as they are accounted for in three different models: the teaching model; the psychotherapeutic model; and the responsibility model. The elaboration of these models involves an identification of the larger traditions, visions and theories of communication that underwrite them; the evaluation entails an assessment of each model’s theses and ultimately a comparison of their adequacy in response to two important concerns in genetic counseling: the contested values (...) of non-directiveness and the recognition of differences across perspectives, with special focus on how religious and spiritual beliefs of patients are coordinated with the networks of meaning in genetics. Several insights are made explicit in this project through the work of Robert Brandom. Brandom’s deontic scorekeeping model demonstrates how dialogue is at the root of grasping a conceptual content. Against this backdrop, professional communications such as genetic counseling can be seen as late developments in linguistic practices that have structural challenges. Brandom’s model reminds us that the professional needs the client’s understanding to grasp conceptual content in a particular context. (shrink)

The introduction of non-invasive prenatal testing in healthcare systems around the world offers an opportunity to reconsider funding policies for prenatal screening. In some countries with universal access healthcare systems, pregnant women and their partners are asked to pay for NIPT. In this paper, we discuss two important rationales for charging women for NIPT: to prevent increased uptake of NIPT and to promote informed choice. First, given the aim of prenatal screening, high or low uptake rates are not intrinsically desirable (...) or undesirable. Using funding policies to negatively affect uptake, however, is at odds with the aim of screening. Furthermore, copayment disproportionally affects those of lower socioeconomic status, which conflicts with justice requirements and impedes equal access to prenatal screening. Second, we argue that although payment models may influence pregnant women’s choice behaviours and perceptions of the relevance of NIPT, the copayment requirement does not necessarily lead to better-informed choices. On the contrary, external influences on women’s personal choices for or against prenatal screening should ideally be avoided. To improve informed decision-making, healthcare systems should instead invest in adequate non-directive, value-focused pretest counselling. This paper concludes that requiring copayments for NIPT in universal access healthcare systems fails to promote reproductive autonomy and is unfair. (shrink)

This essay takes a Traditional Christian, that is, Orthodox look at the integration of psychotherapy into pastoral counseling, as endorsed by many Western mainline Christianities. It examines how the Christian pastor can guide his sheep through the bioethical problems they encounter in their pursuit of salvation. The first part explores whether the turn to psychology and psychotherapy can be welcomed as a return to the Traditional therapeutic understanding of theology and of the Church as a spiritual hospital for fallen souls. (...) The second part examines two typical ways in which non-Orthodox Christianities embrace psychotherapy in pastoral counseling, as directed to unburdening parishioners from their doubts about bioethical decision making in the context of a Christian life. This part highlights the theological assumptions (about the pastor, his care, and the notion of God informing both) framing that embrace and shows them to be incompatible with the Traditional commitment to man's Divine vocation. The turn to psychotherapy here, rather than inaugurating a return to the therapeutic spirit of Traditional theology, offers a secularized substitute. The third part investigates the possibility of a Traditional Christian way of practicing psychotherapy along with its significance for Orthodox pastoral care in bioethical counseling. Here it becomes clear that, even beyond incompatible theological assumptions, already psychotherapy's endorsement of a predominantly discursive approach to healing is alien to Traditional pastoral care. (shrink)

Direct-to-consumer genetic testing has been available for several years now, with varying degrees of regulation across different countries. Despite a restrictive legal framework it is possible for consumers to order genetic tests from companies located in other countries. However, German laypeople’s awareness and perceptions of DTC GT services is still unexplored. We conducted seven focus groups with German laypeople to explore their perceptions of and attitudes towards commercial genetic testing and its ethical implications. Participants were critical towards DTC GT. Criticism (...) was directed at health-related, predictive testing, while lifestyle tests were accepted and even welcomed to some extent. Participants expressed strong reservations regarding commercial provision of genetic diagnostics and expressed a lack of trust in respective companies. They preferred non-commercial distribution within the public healthcare system. Participants also expressed high expectations of physicians’ abilities to interpret information obtained via DTC GT companies and provide counseling. Legal restrictions on commercial distribution of genetic tests were opposed, with participants arguing that it should be available to consumers. DTC GT companies are not perceived as trustworthy when compared to the public healthcare system and its professional ethical standards and practices. Laypeople rated general consumer autonomy higher than their own concerns, thus recommending against strong legal regulation. We conclude that medicine’s trustworthiness may be negatively affected if commercial provision is not visibly opposed by the medical professions, while DTC GT companies may gain in trustworthiness if they adapt to standards and practices upheld in medicine. (shrink)

In our paper ‘The ethical case for non-directed postmortem sperm donation’ we argued that it would be ethical for men to donate sperm after death for use by strangers. In their thoughtful response Fredrick and Ben Kroon lay out practical concerns regarding our proposal. They raise issues regarding the quality of sperm collected postmortem based on empirical studies. Second, they claim that concerns about quality would make women unlikely to use sperm collected after death. In this response we explore issues (...) of sperm quality in both living and dead donors. We consider whether there might be ways to ensure quality in both. Finally, we question whether quality should be a barrier to women choosing to use sperm donated after death. (shrink)

In their recent ‘The ethical case for non-directed postmortem sperm donation’, Hodson and Parker outline and defend the concept of voluntary non-directed postmortem sperm donation, the idea that men should be able to register their desire to donate their sperm after death for use by strangers since this would offer a potential means of increasing the quantity and heterogeneity of donor sperm. In this response, we raise some concerns about their proposal, focusing in particular on the fact that current methodologies (...) do not make for a reliable way of ensuring that sperm retrieved postmortem has a good chance of leading to conception, which is in turn likely to make potential recipients reluctant to use such sperm. These concerns add to the ethical doubts that attend aspects of the proposal, making the prospect of implementation of such a policy unlikely at best. (shrink)

ABSTRACT Research groups around the world are developing non‐invasive methods of prenatal genetic diagnosis, in which foetal cells are obtained by maternal blood test. Meanwhile, an increasing number of genetic tests are sold directly to the public. I extrapolate from these developments to consider a scenario in which PNGD self‐testing kits are sold directly to the public. Given the opposition to over‐the‐counter genetic tests and the continuing controversy surrounding PNGD, it is reasonable to expect objections to PNGD self‐testing kits. I (...) focus on one potential objection, that PNGD self‐testing kits would undermine the autonomy of potential test subjects. More specifically, that ‘direct to the public’ PNGD would fail to ensure that consumers exercise autonomy in the following PNGD‐related choices: • Should I use PNGD? • Based on the results of the PNGD test, should I continue or terminate my pregnancy? Under the current system, PNGD is provided by health care practitioners, who are required to counsel women both before and after the test. In contrast, ‘direct to the public’ PNGD would allow women to make their PNGD‐related decisions outside the context of the health care system. I compare these two decision‐making contexts, arguing that the health care system is not unequivocally better at promoting the autonomy of potential test subjects. Therefore the promotion of autonomy does not constitute a strong argument against such test kits. Other objections may be more persuasive, so I do not offer an overall assessment of the acceptability of ‘direct to the public’ PNGD. (shrink)

This article describes a new prenatal genetic test that is painless, early, and increasingly available. State legislatures have reacted by prohibiting abortion for reason of fetal sex or of fetal diagnosis and managing genetic counseling. This article explores these legislative responses and considers how physicians and genetic counselors currently communicate post-testing options. The article then examines the challenges ahead for genetic counseling, particularly in light of the troubling grip of abortion politics on conversations about prenatal diagnosis.

In this article we outline and defend the concept of voluntary non-directed postmortem sperm donation. This approach offers a potential means of increasing the quantity and heterogeneity of donor sperm. This is pertinent given the present context of a donor sperm shortage in the UK. Beyond making the case that it is technically feasible for dead men to donate their sperm for use in reproduction, we argue that this is ethically permissible. The inability to access donor sperm and the suffering (...) this causes, we argue, justifies allowing access to sperm donated after death. Moreover, it is known that individuals and couples have desires for certain sperm donor characteristics which may not be fulfilled when numbers of sperm donors are low. Enacting these preferences contributes significantly to the well-being of intended parents, so we argue that this provides apro tantoreason for respecting them. Finally, we explore the benefits and possible disadvantages of such a system for the various parties affected. (shrink)

Chronic widespread pain is one of the most difficult pain conditions to treat due to an unknown etiology and a lack of innovative treatment design and effectiveness. Based upon preliminary findings within the fields of motivational psychology, integrative neuroscience, diaphragmatic breathing, and vagal nerve stimulation, we propose a new treatment intervention, motivational nondirective resonance breathing, as a means of reducing pain and suffering in patients with chronic widespread pain. Motivational nondirective resonance breathing provides patients with a noninvasive means of potentially (...) modulating five psychophysiological mechanisms imperative for endogenously treating pain and increasing overall quality of life. (shrink)

Prenatal screening pathways, as nowadays offered in most Western countries consist of similar tests. First, a risk‐assessment test for major aneuploides is offered to pregnant women. In case of an increased risk, invasive diagnostic tests, entailing a miscarriage risk, are offered. For decades, only conventional karyotyping was used for final diagnosis. Moreover, several foetal ultrasound scans are offered to detect major congenital anomalies, but the same scans also provide relevant information for optimal support of the pregnancy and the delivery.Recent developments (...) in prenatal screening include the application of microarrays that allow for identifying a much broader range of abnomalities than karyotyping, and non‐invasive prenatal testing (NIPT) that enables reducing the number of invasive tests for aneuploidies considerably. In the future, broad NIPT may become possible and affordable.This article will briefly address the ethical issues raised by these technological developments. First, a safe NIPT may lead to routinisation and as such challenge the central issue of informed consent and the aim of prenatal screening: to offer opportunity for autonomous reproductive choice. Widening the scope of prenatal screening also raises the question to what extent ‘reproductive autonomy’ is meant to expand. Finally, if the same test is used for two different aims, namely detection of foetal anomalies and pregnancy‐related problems, non‐directive counselling can no longer be taken as a standard. Our broad outline of the ethical issues is meant as an introduction into the more detailed ethical discussions about prenatal screening in the other articles of this special issue. (shrink)

The rural crisis of the 1980s is described in terms of the economic and social vulnerability of rural farm areas. The crisis is shown spreading from farms through families to rural communities, schools, churches, counties and beyond. Rural communities are shown to be undergoing dramatic and non-cyclical change. Criteria are defined to identify rural counties vulnerable to further economic losses and include: dependence on agriculture for jobs, inadequate off farm income, population losses, declines in residential and commercial property value, and (...) county fiscal crises due to loss of the tax base, delinquincies, and additional federal and state program changes and cutbacks. Social and economic distress are so extensive as to overwhelm conventional emergency intervention efforts to provide food, shelter, access to health care, and professional counseling. Peer support programs have been found to be effective at reaching farm families and helping them seek out the assistance of farm financial advisors, counselors, food shelves, and public assistance. Emerging attempts to link politically contending parties are discussed, specifically the Reinvest in Minnesota Coalition and the Rural Strategy Task Force consisting of major farm, church, and lending organizations. A strategy process and stakeholder analysis for local communities are presented together with recommendations for action that include creating a rural trend watch capability. (shrink)

Prenatal screening pathways, as nowadays offered in most Western countries consist of similar tests. First, a risk-assessment test for major aneuploides is offered to pregnant women. In case of an increased risk, invasive diagnostic tests, entailing a miscarriage risk, are offered. For decades, only conventional karyotyping was used for final diagnosis. Moreover, several foetal ultrasound scans are offered to detect major congenital anomalies, but the same scans also provide relevant information for optimal support of the pregnancy and the delivery. Recent (...) developments in prenatal screening include the application of microarrays that allow for identifying a much broader range of abnomalities than karyotyping, and non-invasive prenatal testing that enables reducing the number of invasive tests for aneuploidies considerably. In the future, broad NIPT may become possible and affordable. This article will briefly address the ethical issues raised by these technological developments. First, a safe NIPT may lead to routinisation and as such challenge the central issue of informed consent and the aim of prenatal screening: to offer opportunity for autonomous reproductive choice. Widening the scope of prenatal screening also raises the question to what extent ‘reproductive autonomy’ is meant to expand. Finally, if the same test is used for two different aims, namely detection of foetal anomalies and pregnancy-related problems, non-directive counselling can no longer be taken as a standard. Our broad outline of the ethical issues is meant as an introduction into the more detailed ethical discussions about prenatal screening in the other articles of this special issue. (shrink)

The ArgumentA survey of 2901 genetics professionals in 36 nations suggests that eugenic thought underlies their perceptions of the goals of genetics and that directiveness in counseling after prenatal diagnosis leads to individual decisions based on pessimistically biaed information, especially in developing nations of Asia and Eastern Europe. The “non-directive counseling” found in English-speaking nations is an aberration from the rest of the world. Most geneticists, except in China, rejected government involvement in premarital testing or sterilization, but most also held (...) a pessimistic view of persons with genetic disabilities. Individual, but not state-coerced, eugenics survives in much modern genetic practice. (shrink)

Aspects of the current practice of prenatal diagnostics in Russia are surveyed. In the light of this, various ethical concerns are highlighted: (1) the requirement of parental informed consent to testing is not always sufficiently respected either in state regulation or in the practice of physicians; (2) not all Russian physicians are aware of international guidelines or standards of good practice in areas such as non-directive counselling, patient confidentiality with respect to genetic information and the patient’s right to maintain (...) control over his or her information; (3) abortion is viewed increasingly as an aspect of preventive medicine. (shrink)

We report a unique, collaborative effort by users and providers of genetic services to arrive at outlines for optimal ethics and clinical practice. Using focus groups of consumers and providers , a provider-consumer project team developed 1) a consumer wish list, 2) an experientially based ethical overview of situations arising in practice, and 3) detailed suggestions for consumer-provider interactions in clinical settings. Consumers were primarily interested in accurate information, respect for persons, a smoothly functioning team, with the consumer as an (...) equal member of the team, family integrity, and providers who knew the limits of their knowledge and were willing to refer. “Non-directive” counselling and privacy were not major issues in consumer focus groups; some thought providers should openly state their own opinions. Providers had a rather different list of priorities.Books and papers on clinical ethics usually originate from bioethicists and physicians. This pilot project is unique in including consumers and providers equally. (shrink)

As of September 2006, non-directed donation of kidneys and other tissues and organs is permitted in the UK under the new Human Tissue Acts. At the same time as making provision for psychiatric and clinical assessment of so-called “altruistic” donations to complete strangers, the Acts intensify assessments required for familial, genetically related donations, which will now require the same level as genetically unrelated but “emotionally” connected donations by locally based independent assessors reporting to the newly constituted Human Tissue Authority. But (...) there will also need to be considerable reflection on the criteria for “stranger donation”, which may lead us to a new understanding of the moral economy of altruistic organ donation, no matter how mixed the motives of the donor may be. This paper looks at some of the issues that will have to be accommodated in such a framework. (shrink)

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non-invasive prenatal testing (NIPT) in first-trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed consent compared to (...) informed choice, and for a focus on value-consistent choices and personalized informational preferences. We argue for a three-step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical-technical information and are asked to make a decision about screening; (3) during post-test counselling, women are supported in decision-making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre-test) counselling, where techniques for expanding genome analysis and burdensome test-outcomes challenge counselling of patients. (shrink)

Informed consent is a key condition for prenatal screening programmes to reach their aim of promoting reproductive autonomy. Reaching this aim is currently being challenged with the introduction of non‐invasive prenatal testing (NIPT) in first‐trimester prenatal screening programmes: amongst others its procedural ease—it only requires a blood draw and reaches high levels of reliability—might hinder women’s understanding that they should make a personal, informed decision about screening. We offer arguments for a renewed recognition and use of informed consent compared to (...) informed choice, and for a focus on value‐consistent choices and personalized informational preferences. We argue for a three‐step counselling model in which three decision moments are distinguished and differently addressed: (1) professionals explore women’s values concerning whether and why they wish to know whether their baby has a genetic disorder; (2) women receive layered medical‐technical information and are asked to make a decision about screening; (3) during post‐test counselling, women are supported in decision‐making about the continuation or termination of their pregnancy. This model might also be applicable in other fields of genetic (pre‐test) counselling, where techniques for expanding genome analysis and burdensome test‐outcomes challenge counselling of patients. (shrink)

In "Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?," Bayefsky and Berkman argue in favor of establishing three categorie...

: The accelerated discovery of gene mutations that lead to increased risk of disease has led to the rapid development of predictive genetic tests. These tests improve the accuracy of assigning risk, but at a time when intervention or prevention strategies are largely unproved. In coming years, however, data will become increasingly available to guide treatment of genetic diseases. Eventually genetic testing will be performed for common diseases as well as for rare genetic conditions. This will challenge genetic counseling practice. (...) The ethical principles that now guide this practice take into account the personal nature of test decision making, the need to respect individual self-determination, and the importance of client confidentiality. Certain of these principles may have to be modified as genetic testing becomes more widespread in order to meet the changing needs of clients and society. This paper offers recommendations to ensure that genetic counselors will take a leading role in the future delivery of ethical genetic services. (shrink)

Objective Standards of care regarding obstetric management of life-threatening anomalies are not defined. It is hypothesised that physicians' management of these pregnancies is variable and influenced by demographic factors. Design A questionnaire was mailed to members of the Society of Maternal–Fetal Medicine with valid US addresses assessing obstetric management of both ‘uniformly lethal’ (eg, anencephaly, renal agenesis) and ‘uniformly severe, commonly lethal’ (eg, trisomy 13 and 18) anomalies. Respondents were asked to answer as if not limited by state/institutional restrictions. Fisher's (...) exact or χ2 tests were used as appropriate and correction made for multiple comparisons in analyses that were not prespecified. Results The response rate was 36% (732/2038). Nearly 100% of respondents discuss termination for both uniformly and commonly lethal anomalies. In continuing pregnancies, with patient request for obstetric non-intervention 99% of providers would comply for either uniformly or commonly lethal anomalies. The majority ‘encourage’ such management, but some were non-directive or discouraged this management. In continuing pregnancies, with patient request for full obstetric intervention the majority of respondents was willing to comply for both uniformly (71%) and commonly (82%) lethal anomalies. While most practitioners ‘discouraged’ full intervention, some were non-directive or encouraged this management. Demographics and severity of anomaly influenced counselling. Conclusion Discrepancies exist regarding the management of life-threatening fetal anomalies. Patients may be offered different options based on practitioner demographics. The majority of physicians comply with patient wishes. Differences were noted when comparing the management of lethal with that of severe commonly lethal anomalies, suggesting that practitioners make a distinction when counselling patients. (shrink)

Parents who are facing decisions about life-sustaining treatment for their seriously ill or dying child are supported by their child's doctors and nurses. They also frequently seek other information sources to help them deal with the medical and ethical questions that arise. This might include written or web-based information. As part of a project involving the development of such a resource to support parents facing difficult decisions, some ethical questions emerged. Should this information be presented in a strictly neutral fashion? (...) Is it problematic if narratives, arguments or perspectives appear to favour stopping over continuing life-sustaining treatment? Similar questions might arise with written materials about decisions for adults, or for other ethically contentious decisions. This paper explores the meaning of ‘balance’ in information provision, focusing particularly on written information about life-sustaining treatment for children. We contrast the norm of non-directiveness in genetic counselling with the shared decision-making model often endorsed in end-of-life care. We review evidence that parents do not find neutrality from medical professionals helpful in discussions. We argue that balance in written information must be understood in the light of the aim of the document, the most common situation in which it will be used, and any existing biases. We conclude with four important strategies for ensuring that non-neutral information is nevertheless ethically appropriate. (shrink)

Living kidney donation provides a promising opportunity in situations where the scarcity of cadaveric kidneys is widely acknowledged. While many patients and their relatives are willing to accept its benefits, others are concerned about living kidney programs; they appear to feel pressured into accepting living kidney transplantations as the only proper option for them. As we studied the attitudes and views of patients and their relatives, we considered just how actively health care professionals should encourage living donation. We argue that (...) active interference in peoples’ personal lives is justified - if not obligatory. First, we address the ambiguous ideals of non-directivity and value neutrality in counselling. We describe the main pitfalls implied in these concepts, and conclude that these concepts cannot account for the complex reality of living donation and transplantation. We depict what is required instead as truthful information and context-relative counselling. We then consider professional interference into personal belief systems. We argue that individual convictions are not necessarily strong, stable, or deep. They may be flawed in many ways. In order to justify interference in peoples’ personal lives, it is crucial to understand the structure of these convictions. Evidence suggests that both patients and their relatives have attitudes towards living kidney donation that are often open to change and, accordingly, can be influenced. We show how ethical theories can account for this reality and can help us to discern between justified and unjustified interference. We refer to Stephen Toulmin’s model of the structure of logical argument, the Rawlsian model of reflective equilibrium, and Thomas Nagel’s representation of the particularistic position. (shrink)

This paper explores the use of advance directives in clinical dementia research. The focus is on advance consent to participation of demented patients in non-therapeutic research involving more than minimal risks and/or burdens. First, morally relevant differences between advance directives for treatment and care, and advance directives for dementia research are discussed. Then attention is paid to the philosophical issue of dementia and personal identity, and the implications for the moral authority of research advance directives. Thirdly, a number of practical (...) shortcomings of advance directives for non-therapeutic dementia research are explored and attention is paid to the role of proxies. It is concluded that upon a closer look the initial attractiveness of advance directives for dementia research is lessened, and that it is doubtful whether these instruments can compensate for the lack of subject consent in case of non-therapeutic dementia research involving more than minimal risks and/or burdens for the incompetent demented subject. (shrink)

Linguistic dependencies between non‐adjacent words have been shown to cause comprehension difficulty, compared with local dependencies. According to one class of sentence comprehension accounts, non‐local dependencies are difficult because they require the retrieval of the first dependent from memory when the second dependent is encountered. According to these memory‐based accounts, making the first dependent accessible at the time when the second dependent is encountered should help alleviate the difficulty associated with the processing of non‐local dependencies. In a dual‐task paradigm, participants (...) read sentences that did or did not contain a non‐local dependency (i.e., object‐ and subject‐extracted cleft constructions) while simultaneously remembering a word. The memory task was aimed at making the word held in memory accessible throughout the sentence. In an object‐extracted cleft (e.g., It was Ellen whom John consulted…), the object (Ellen) must be retrieved from memory when consulted is encountered. In the critical manipulation, the memory word was identical to the verb's object (ELLEN). In these conditions, the extraction effect was reduced in the comprehension accuracy data and eliminated in the reading time data. These results add to the body of evidence supporting memory‐based accounts of syntactic complexity. (shrink)