Taking organisational responses to the ?organ retention scandals? in the United Kingdom and Australia as a starting point, this paper considers the role of social welfare workers within the medico-legal system. Official responses to the inquiries of the late 1990s have focused on issues of consent and process-transparency, leaving unaddressed concerns expressed by the bereaved about the impact of organ retention on both their experience of grief and on the deceased themselves. A review of grief and embodiment literature suggests that (...) such concerns are consistent with the significance of relationship, attachment and identity within grief resolution?however that last problematic term is defined. The case example of an Australian coronial jurisdiction which has attempted to deal with some of these issues through mandating the discussion of autopsy and organ retention processes by grief counsellors with bereaved families is then provided. A distinction is drawn between these discussions and the seeking of consent. The discussion concludes by considering the ambiguous nature of the social welfare role within this contested field, suggesting that this ambiguity, while perhaps a source of flexibility in practice, may itself relate to a lack of clear information about the needs of the bereaved. This paper contributes to the development of that knowledge and offers some necessarily tentative recommendations regarding social welfare practice in this challenging arena. (shrink)

Philosophical counseling can be understood as the facilitation of personal narratives in which an individual’s moral frameworks are clarified and re-prioritized. Drawing on Charles Taylor’s notion of narrative, hyper-goods and moral frameworks, and applying them to a case study, this article shows the different roles family can play in the formation of a personal narrative.

(2001). Family Covenants and Genetic Testing: Utilizing the Skills Of Counseling Professionals in Implementing Family Covenants. The American Journal of Bioethics: Vol. 1, No. 3, pp. 1-2.

Infertility specialists may be confronted with the ethical dilemma of whether to disclose misattributed paternity (MP). Physicians should be prepared for instances when an assumed father’s evaluation reveals a condition known for lifelong infertility, for example, congenital bilateral absence of vas deferens (CBAVD). When there is doubt regarding a patient’s comprehension of his diagnosis, physicians must consider whether further disclosure is warranted. This article describes a case of MP with ethics analysis that concludes that limited nondisclosure is most consistent with (...) a physician’s principled duties to inform, to respect patients’ autonomy, and to employ nonmaleficence (including the avoidance of psychosocial harms). (shrink)

The relationship between career counselling and widening participation is increasingly capturing the attention of educational researchers, especially those interested in its social justice implications. International research on first-in-family students demonstrates the continual class-based barriers they are faced with which influence their progression into and through higher education. Career counselling has an important role to play in both supporting first-in-family students to not only enter university but also set them on a career trajectory which allows them to fulfil their (...) aspirations. However, access to effective forms of career counselling remains fragmented and highly dependent on social class. This article explores how first-in-family students engage in what we call ‘DIY career counselling,’ where they draw on their informal networks and the internet to enhance their understanding of their future prospects and possible trajectories. Their efforts suggest a strong desire to learn more about what university can offer them and how they can position themselves advantageously in the job market; furthermore, their efforts also suggest a consumerist awareness that the career counselling on offer in their secondary schools was lacking. (shrink)

Gender-affirming hormone therapy is increasingly available to support healthy development of transgender youth, but ethical concerns have been raised regarding fertility-related implications. In this article, I present data from an exploratory qualitative study of the decision-making experiences of trans youth, parents of trans youth, and healthcare providers serving trans youth related to fertility and family creation. I discuss how cisnormative and bionormative biases can impact care and contribute to ethically problematic narratives of regret. Finally, I offer recommendations to support (...) ethically sound, gender-affirmative fertility and family creation counseling with transgender youth. (shrink)

This study, by means of conversation analysis, comprehensively illuminates the advisee’s acceptance of advice in Chinese phone-in counseling for family problems from the perspective of Epistemics, and reveals advisee’s type of management of the epistemic status relationship as well as the epistemic stances during executing the management. The study finds that the advisee tacitly approved of the asymmetric relationship of epistemic status between an adviser and himself/herself when accepting advice; that this type of relationship management can be executed (...) through four kinds of epistemic stances; that these stances actually reflect the advisee’s positioning of asymmetric relationship of knowledge distribution of both parties. This study investigates the acceptance of advice from the perspective of Epistemics, which can extend the theoretical perspective of the researches on responses to advice and give new illumination of the advisory interaction. (shrink)

This edited volume comprehensively examines the critical ethical challenges that arise in the practice of counselling and psychotherapy. It translates philosophical positions and professional ethical guidelines in a way that can be applied to practice. The various chapters focus on specific ethical issues that emerge in working with a range of different client groups; for example, children, couples and families. While some ethical imperatives are common across the board, others could be more closely associated with certain client groups. Practitioners might (...) experience uncertainty in working with vulnerable client groups; for example, lesbian/gay/transgender/intersex (LGBT) clients, or persons who report intimate partner violence. Several chapters raise questions, provide information and additional resources to enhance ethically informed practice. Chapter contributions also highlight the ethical dilemmas that might be unique to certain contexts; for example, private practice, schools and consultation-liaison settings. This volume also addresses contemporary and relatively less understood playing fields like 'digital ethics' related to therapist-client interface in the internet space and the navigation of ethical dilemmas in the newly emerging field of employee assistance programmes which address mental health needs in the corporate sector. Written by experienced practitioners of psychotherapy, and culturally contextualized, this is a valuable resource for academics and practitioners interested in psychotherapy and counselling. (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.

Ethics and Decision Making in Counseling and Psychotherapy has a distinct and timely focus on counseling as a profession. Chapters address the mental health professions, values in counseling, decision making, ethical principles, ethical standards, technology, ethical climate, and office/administrative practices. The early chapters present a foundation for ethical practice of the profession and provides solid building blocks to the more advanced perspectives in later chapters. Chapters on specialty practice are lively and contemporary overviews of these practice areas (...) in counseling that reflect more recent trends to increased differentiation of these areas of practice. Each specialty has its own chapter to allow for an extended discussion of the unique aspects of the field that provide clarity to understanding the particular ethical issues and standards that apply in each specialty. The specialty areas recognized by CACREP are included: mental health counseling; school counseling; couple, marital, and family counseling; rehabilitation counseling; addictions counseling; career counseling; and group counseling. This book is broad in its coverage of the most practiced specialties in mental health practice, and provides an efficient and effective overview of the broad scope of particular areas addressed in counseling. (shrink)

One promising form of philosophical practice is to conduct workshops on philosophical counseling for counselors. Since licensed professionals, such as Marriage and Family Counselors and Licensed Clinical Social Workers sometimes confront situations that raise philosophical issues and usually have a philosophical perspective that informs their practice, they could profit from a workshop on philosophical counseling; the workshop also qualifies for continuing education units (CEUs) that are typically required to renew their licenses. This paper describes the principal purposes (...) of a workshop for counselors, the structure of two such workshops, and suggestions for improvement of future workshops. (shrink)

_Families of Virtue_ articulates the critical role of the parent-child relationship in the moral development of infants and children. Building on thinkers and scientists across time and disciplines, from ancient Greek and Chinese philosophers to contemporary feminist ethicists and attachment theorists, this book takes an effective approach for strengthening families and the character of children. Early Confucian philosophers argue that the general ethical sensibilities we develop during infancy and early childhood form the basis for nearly every virtue and that the (...) parent-child relationship is the primary context within which this growth occurs. Joining these views with scientific work on early childhood, _Families of Virtue_ shows how Western psychology can reinforce and renew the theoretical underpinnings of Confucian thought and how Confucian philosophers can affect positive social and political change in our time, particularly in such areas as paid parental leave, breastfeeding initiatives, marriage counseling, and family therapy. (shrink)

This article investigates National Defense Education Act and National Defense Education Act-related calls in the late 1950s for the training of guidance counselors, an emergent profession that was to play an instrumental role in both the measuring and placement of students in schools by “intelligence” or academic “ability”. In analyzing this mid-century push for more guidance counseling in schools, this article will first explore a foundational argument for the fairness of intelligence testing made by Educational Testing Service psychometrician William (...) Turnbull in 1951, and then later taken up and employed by other National Defense Education Act-era advocates of testing and grouping. Secondly, this analysis will proceed to National Defense Education Act expert testimony, examining here assertions of the necessity of guidance counseling in schools, and an emergent and shared vision articulating the role guidance counseling was supposed to play in school life. A pattern or structure to this vision emerges here. According to its advocates, guidance counseling would not only inform the self-understanding of the measured individual, but it would also work to condition the ideology of individual intelligence across numerous layers of social life around the student: through peer group, through teachers and school administrators, and finally through home, family, and the wider community. (shrink)

This study was conducted from May to June 2005 to describe the demographic characteristics and factors that affect the VCT acceptance as well as the HIV prevalence among youth VCT acceptors in Addis Ababa. Both quantitative and qualitative methods of data collection were employed. The quantitative data was generated from a two years (October 2002 to December 2004) VCT service utilization data obtained from four youth centers located in Addis Ababa. The data was analysed using univariate and multivariate analysis and (...) results were presented in the form of text, table and figures. The significance and level of associations between independent and dependant variables was computed using X2 tests and odds ratios with 95% confidence interval. The qualitative data was presented in a form of narrations using excerpts. During the period a total of 3220, youth age 15 - 24 years have sought VCT service from the four youth centres VCT service outlets. Higher proportions of females (60.2%) and youth in the age category of 20 – 24 years (58.0%) have accessed the service. The major reasons given for seeking VCT were found to be similar for male and female acceptors. About 71.2% said that they sought for VCT service because they wanted to know their HIV status, 9.5% reported because they were suspicious of being infected with HIV and 5.0% tested because they wanted to go aboard. The HIV prevalence rate is found to be significantly higher, (p = 0.00), among females 9.2 % than in males 1.7 %. Gender segregated multivariate analysis of risk factors indicated significant association of HIV infection with lack of formal education for both males and female: for males P= 0.045, OR = 18.3, 95% CI: 1.1 – 317.7 and for females P=0.00, OR=19.4, 95 % CI: 5.1 – 73.8. Additionally for females HIV infection is markedly associated with being widowed and commercial sex worker. The most common barrier for youth in Addis from accessing VCT were found to be: fear of being emotionally affected if found out HIV positive, stigma and discrimination, lack of money to pay for VCT service, absence of care and support services for people who are already infected. The challenges encountered by youth VCT counsellors were stress, absence of medical care for PLWHA, inadequacy of budget, lack of counsellors and supportive supervision. This study showed high burden of HIV infection among female youth and the risk factors associated with it. Formal education for both females and males is strongly recommended. Female focused HIV prevention interventions are indicated. Additional recommendations are also made in relation to barriers to access youth VCT and for the challenges encountered by youth VCT service providers. (shrink)

Tolerance is not neutrality, nor should tolerance in counselling be equated with a spiritual and emotional vacuum. Tolerance applies to style rather than stance, and a counsellor needs a conception of the ideal — broadly speaking, a moral position. Originally proclaimed against religious and political tyranny, the political ideal of tolerance has in the twentieth century become confused with permissiveness, and is thus sometimes charged with generating many of the ills of modern society, including crime and family breakdown. Counselling (...) has become the universal remedy, replacing punishment and compulsion. The counsellor needs (a) a view of human nature (b) a conception of what is good for those possessing that nature. Constants in the first mean there cannot be too much variation in the second. Society is varied and plural, so the counsellor must be non‐judgemental, but while this means accepting the person, it does not necessarily mean endorsing the conduct. A distinction is drawn between therapeutic and philosophical counselling; the latter considers a problem, where the former focusses on the client, but both may fall short of offering a holistic view. Counselling may also exacerbate some of the problems of modern life by too readily accepting the conditions which cause them. Some ethical problems raised by confidentiality and informed consent are discussed. It is concluded that the counsellor must be tolerant, but not morally ambivalent, nor a relativist. (shrink)

Background: It is not known how neonatologists address the affective and cognitive loads on parents deciding whether to resuscitate infants born extremely preterm. This study explores expert neonatologists' views on these decision-making processes and their own roles in counseling parents. Methods: Semistructured interviews asked internationally recognized experts to share their perspectives on perinatal consultations. Their responses were subjected to thematic analysis. Results: Eighteen of 22 invited experts participated. Approximately equal numbers reported employing a physician-driven approach, a parent-driven approach, and (...) a combined approach during these consultations. Those who followed a physician-driven approach typically focused on conveying standard information about adverse outcomes. Those who followed a parent-driven approach typically focused on addressing parents' information requests, guiding their decision making, and providing affective support. Nearly all experts, in each group, endorsed addressing the child's quality of life, in terms of functionality, when discussing long-term outcomes. Although many believed that families adjusted to life with a disabled child, few discussed the topic during prenatal consultations. Most, in each group, reported trying to alleviate future “decisional regret” for parents whose premature infants subsequently became disabled. None spoke to parents about possible decisional regret after deciding to forgo resuscitation. Conclusions: Expert neonatologists are deeply concerned that parents understand the decision facing them. However, they differ on what information they offer and how they balance parents' need for cognitive and affective support. They expressed more concern about parents' decisional regret should their child survive resuscitation, but have severe disability, than about decisional regret after foregoing resuscitation. (shrink)

Psychotherapy holds out the promise of help for people who are hurting and in need. It can save lives and change lives. In therapy, clients can find their strengths and sense of hope. They can change course toward a more meaningful and healthy life. They can confront loss, tragedy, hopelessness, and the end of life in ways that do not leave them numb or paralyzed. They can discover what brings them joy and what sustains them through hard times. They can (...) begin to trust, or to trust more wisely. They can learn new behaviors in therapy and how to teach themselves new behaviors after therapy ends. They can question what they always believed was a given. They can find out what matters most to them, and how to stop wasting time. They can become happier, or at least less miserable. They can become better able, as Freud noted, to love and to work. They can learn how to accept and love themselves just as they are and accept others who are different from them. Our ethics acknowledge and affirm our profession's responsibilities. This book was written to help strengthen, deepen, and inform ethical awareness and the sense of personal ethical responsibility. Its job is to help you hold onto the ideals-including ethical ideals-that called you into the profession to begin with, to help you develop and fulfill those ideals. There will be so much-trust us on this-that tends to dull ethical awareness, to make ethics drift out of focus, to create barriers between you and your ideals, to replace ethics with pseudo-ethics and ethics placebos. Fatigue, endless paperwork, unrealistic expectations, illness, family crises, not being able to make ends meet, burn out, threats of job loss, insurance coverage that doesn't come close to meeting the needs of our clients, biases that have not been addressed, and so many other forces can pressure us into cutting ethical corners. This book is intended to help you develop a strong and healthy resistance to such forces, to help you weather them without losing your ethical awareness and ideals. (shrink)

Background Intestinal transplant in infants with severe short bowel syndrome (SBS) is an emerging therapy, yet without sufficient long-term data or established guidelines, resulting in possible variation in practice. Objectives To assess current attitudes and counselling practices among physicians regarding intestinal transplant in infants with SBS, and to determine whether counselling and management vary between subspecialists or centres. Methods A national sample of practicing paediatric surgeons and neonatologists was surveyed via the American Academy of Paediatrics listserves. Results were analysed by (...) physician subspecialty and again by presence or absence of intestinal transplant at respondent's centre. Results The survey was completed by 433 respondents, consisting of 363 neonatologists and 70 paediatric surgeons. Fifty-seven respondents (13.2%) practiced at a centre that performed intestinal transplants in children. The vast majority of respondents (91% for preterm, 95% for term neonates) felt that maintaining a neonate with SBS on total parenteral nutrition for intestinal transplant was ethically optional (neither impermissible nor obligatory), and that parents should be given an informed choice whether to pursue that option. However, only 33% indicated they often/always offer intestinal transplant as a treatment option to families in this situation. Conclusions There is a marked disparity between individual physicians’ beliefs regarding the acceptability of intestinal transplant for severe SBS and their reported practice. Wide variability exists among physicians with respect to their knowledge, beliefs and practice regarding severe SBS, raising concerns about transparency and justice. Survival data prior to transplant, currently unavailable, are essential to rational decision making and informed parental permission. (shrink)

The emergence of the genetic counseling profession has allowed laypeople to understand and benefit from biological advances, and to make critical decisions about their application. The discipline of genetic counseling has been criticized from its very beginning, in particular because of its early association with the eugenics movement. This paper presents a critical and reflective overview of how genetic counseling is implicitly embedded in the history of eugenics but also counteracts past eugenic practices and ideas. After World (...) War II, attempts were made to distance genetic counseling from eugenics. The first definition of genetic counseling did not position this field as a medical encounter but "as a kind of genetic social work aimed primarily to provide people with an understanding of their family's genetics problems." This approach was a reaction to the genetic and social evolutionary ideas that informed eugenic theories during the first half of the 20th century. Professionals engaged in genetic counseling during the 1940s and1950s rejected eugenic practices, but there was still support for eugenics’ goals of improving heredity and eliminating disease. From the 1960s, genetic counseling underwent professionalization alongside feminization and a definition of core values. Among these values were nondirectiveness counseling and the autonomy of the counselee. The dark shadow of Nazi ideology and other eugenic practices, attempts to employ the historical responsibility of geneticists, and the dynamic medical, social, political, and educational changes of the 1960s and 1970s helped to frame approaches and delineate the goals and limits of the new profession of “genetic counseling.”. (shrink)

The purpose of the current study was to investigate the effects of COVID-19 on high school students' psychological symptoms and to understand how ready counselors and school counseling services are based on the data we have. Therefore, this research is designed under two different studies: Study 1: Effects of COVID-19 pandemic on students' psychological symptoms and Study 2: Views and expectations of students and school counselors about school counseling services. The first study was a quantitative study and included (...) 549 high school students. A structural equation model was created to examine the effects of COVID-19 pandemic on participants' psychological symptoms. The Impact of Event Scale-Revised scores showed that 107 individuals had a score of 50 and above pointing out that individuals in this group had severe impact of event/trauma symptomologies. The SEM analysis indicated that IES-R scores had a total effect of 0.79 on anxiety, 0.75 on depression, 0.74 on negative self-concept, 0.68 on somatization, and 0.66 on hostility scores. Furthermore, female students had significantly higher scores on anxiety, depression, negative self-concept, somatization, hostility, and impact of events variables than male students. Study 2 was a qualitative design and consisted of five school counselors and five students from different schools. The results indicated that students' difficulties during the coronavirus disease 2019 outbreak were educational, cognitive, emotional, physiological, relational, technological, and related to routines. Academic, social, emotional, and behavioral issues came to the fore among the difficulties that can be experienced if students start face-to-face education. On the other hand, the school counselors listed that family relations, personal–social, emotional, and academic themes were the difficulties experienced by the students at the beginning of the COVID-19. In addition, when COVID-19 started, the services offered by school counselors were discussed under services for the student, services for the family, and services for the teacher. Finally, according to the opinions of the school counselors, if students start face-to-face education, they may experience emotional, academic, and relational difficulties. In summary, it is vital that student personality services be prepared and implemented by school counseling services for schools based on the results. (shrink)

This essay explores some relationships between social structures or systems and the internal psychological structures or systems of individuals. After defining evil, pastoral counseling, and structures or systems, I present examples of persons affected by social systems of power who have sought counseling. I present a form of counseling known as Internal Family System Therapy (IFS) and show with an extended example how I have worked with clients using this approach. In this process the client is (...) guided to use "Self-leadership" in healing and transforming inner conflict between various subpersonalities or "parts." I then compare the IFS approach to one used by mediators in community conflict transformation and peacebuilding. (shrink)

Beginning with a discussion of why value neutrality on the part of the genetics counselor does not necessarily preserve autonomy of the counselee, the idea that social values unavoidably underlie the articulation of risks and benefits of genetic testing is made explicit. Despite the best efforts of a counselor to convey value neutral facts, risk assessment by the counselee and family is done according to normative analysis, experience with illness, and definitions of health. Each of these factors must be (...) known by the genetic counselor in order to relate those facts which she acknowledges as relevant to the decisions that will be made by those people seeking the genetic information. (shrink)

This is the second paper in a two-part series describing subject and family perspectives from the CENTURY-S (CENtral Thalamic Deep Brain Stimulation for the Treatment of Traumatic Brain InjURY-Safety) first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury (msTBI). To participate, subjects were independently assessed to formally establish decision-making capacity to provide voluntary informed consent. Here, we report on post-operative interviews conducted after a successful trial of thalamic stimulation. All five msTBI subjects (...) met a pre-selected primary endpoint of at least a 10% improvement in completion time on Trail-Making-Test Part B, a marker of executive function. We describe narrative responses of subjects and family members, refracted against that success. Interviews following surgery and the stimulation trial revealed the challenge of adaptation to improvements in cognitive function and emotional regulation as well as altered (and restored) relationships and family dynamics. These improvements exposed barriers to social reintegration made relevant by recoveries once thought inconceivable. The study’s success sparked concerns about post-trial access to implanted devices, financing of device maintenance, battery replacement, and on-going care. Most subjects and families identified the need for supportive counseling to adapt to the new trajectory of their lives. (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)

BackgroundMany genetic counseling studies have focused on anxiety status because clients of GC often feel anxious during their visits. Metacognition is known to be one of the causes of having an inappropriate thinking style. In this study, we examined the relationship between anxiety and the metacognitive status of GC clients according to their characteristics.MethodsThe participants were 106 clients who attended their first GC session in our hospital from November 2018 to March 2021. The survey items were the clients’ characteristics, (...) anxiety status at the time of the visit, and metacognitive status.ResultsHigh state anxiety and high trait anxiety were observed in 34.9 and 11.3% of clients, respectively. Clients who were a relative or had a family history were significantly more likely to have high state anxiety. As for metacognitive status, only negative beliefs about thoughts concerning uncontrollability and danger were associated with having an anxiety status. Furthermore, multivariate analysis showed that negative beliefs about thoughts concerning uncontrollability and danger were an independent determinant of higher state anxiety, but not being a relative or having a family history. Metacognitive status scores were significantly lower in clients than in the control group.ConclusionState anxiety was shown to be more dependent on negative beliefs about thoughts concerning uncontrollability and danger of GC clients than their characteristics such as being a relative or having a family history. The results of this study will contribute to the development of new GC psychosocial support measures to address the anxiety of GC clients. (shrink)

Currently, some of the most significant moral issues involving genetic links relate to genetic knowledge. In this paper, instead of looking at the frequently addressed issues of responsibilities professionals or institutions have to individuals, I take up the question of what responsibilities individuals have to one another with respect to genetic knowledge. I address the questions of whether individuals have a moral right to pursue their own goals without contributing to society's knowledge of population genetics, without adding to their (...) class='Hi'>family's knowledge of its genetic history, and without discovering genetic information about themselves and their offspring. These questions lead to an examination of the presumed right to genetic ignorance and an exploration of a variety of social bonds. Analyzing cases in light of these considerations leads to a surprising conclusion about a widely accepted precept of genetic counseling, to some ethical insights into typical problems, and to some further unanswered questions about personal responsibility in the face of genetic knowledge. (shrink)

This book presents strategies for using systemic theory and evidence-based practice in schools to support students, the adults in their lives, and their wider communities. Beginning by introducing and explaining the Advocating Students-within-Environments (ASE) theory, each chapter then addresses a specific school-based issue, such as academic achievement, crisis, trauma, and resiliency, from a systemic and environmental lens. Practical and accessible, the chapters are filled with case examples, evidence-base interventions, and helpful tools to show how counselors can incorporate the approach into (...) their practice. Extending beyond school and student problems, this text also explores greater system functioning, such as community outreach and state level intervention, discussing advocacy and political issues. This book is essential for school-based professionals who are looking for new ways to work with students, families, and their communities. It will also be of interest to mental health professionals who work systemically, such as marriage and family therapists and community counselors. (shrink)

Approximately 1 in 30 people develop cancer due to an underlying familial predisposition. Genetic counselling and testing for people with (and at risk of) familial cancer are becoming more widely available, but service providers need to address challenging issues in relation to privacy and property. As in any counselling situation, a genetic counsellor seeks to ensure that the principles of autonomy, confidentiality, beneficence, and equity operate in favour of the client. But in dealing with a familial disorder, the application of (...) these principles to the individual must be balanced with the potential for these principles to apply to other family members. This paper summarises the recent experience of a familial cancer service in seeking to avoid situations in which these principles, operating for both individual clients and their relatives, can come into conflict. (shrink)

Purpose Although surrogate decision-making is prevalent in intensive care units and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate. Subjects and methods We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. We developed and (...) applied a coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates’ decisions, including whether clinicians explained one or more of Buchanan and Brock’s three standard principles of SDM to family members. Results Clinicians made at least one statement about how to perform the surrogate role in 24 conferences ). We observed three general types of normative guidance provided to surrogates, with some conferences containing more than one type of guidance: counselling about one or more standard principles of SDM ; counselling surrogates to make decisions centred on the patient as a person, without specifying how to accomplish that ; and counselling surrogates to make decisions based on the family’s values. Conclusions Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians’ guidance was often incomplete and sometimes conflicted with standard principles of SDM. Future work is needed to understand whether providing explicit guidance on how to perform the surrogate role improves decision-making or mitigates surrogates’ psychological distress. (shrink)

Purpose Although surrogate decision-making is prevalent in intensive care units and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate. Subjects and methods We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. We developed and (...) applied a coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates’ decisions, including whether clinicians explained one or more of Buchanan and Brock’s three standard principles of SDM to family members. Results Clinicians made at least one statement about how to perform the surrogate role in 24 conferences ). We observed three general types of normative guidance provided to surrogates, with some conferences containing more than one type of guidance: counselling about one or more standard principles of SDM ; counselling surrogates to make decisions centred on the patient as a person, without specifying how to accomplish that ; and counselling surrogates to make decisions based on the family’s values. Conclusions Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians’ guidance was often incomplete and sometimes conflicted with standard principles of SDM. Future work is needed to understand whether providing explicit guidance on how to perform the surrogate role improves decision-making or mitigates surrogates’ psychological distress. (shrink)

Against the background of degeneration and the perceived threat to the nation’s health and stock, family politics came to constitute an important site for eugenic discourses and interventions. Eugenic regulation of reproductive sexuality and marriage was not only pursued through ‘negative’ eugenics but also through educational policies targeted at young adults and youth. Switzerland serves as a useful case to explore a general idea, namely the limitations for eugenicists of exploiting the concept of a rational subject in order to (...) achieve their ends. Practices of ‘positive eugenics’ crucially hinged on the utilitarian principle of rationality underpinning positive eugenics which this paper seeks to elaborate. Eugenicists devised tools to deal efficiently with social problems on a collective as well as an individual basis by deploying technologies of government which conceived individuals to be members of a population who were each held responsible for the generation of healthy future generations. As a form of ‘sustaining, multiplying and ordering life’ eugenics thus relied on the premise that its ideas would be adopted through an appeal to rationality and, where this was insufficient, through a series of coercive measures. Relying on conviction and education about the merits of eugenics, however, posed particular problems to positive eugenic thinking and practice. (shrink)

As in other areas of medical practice, relatives accompany patients to genetic consultations. However, unlike in other areas, the consultations may be relevant to the relatives’ health because they may be at risk of developing the same genetic condition as the patient. The presence of relatives in genetic consultation may affect the decision‐making process and it raises questions about the perception of patient autonomy and the way it is practiced in genetics. However, these issues have not been examined in previous (...) empirical studies. This article aims to fill this gap by reporting findings from a qualitative study with clinicians working in the area of inherited breast cancer. The findings indicate that family presence has an impact on the patient's decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier. The findings further indicate that, unlike in other areas of medical practice, blood relatives who are present in consultations are perceived by clinicians as patients or potential patients, and this in turn increases their involvement in discussions in the consultation room. Finally, the findings indicate that in genetics, a relational approach to autonomy is applied. Decisions are made in a social context, where the relatives’ views are heard and taken into account. The findings suggest that the conventional bioethical approach to autonomy, which perceives the decision‐making unit as comprising a clinician and an individual patient, is challenged in genetics. The findings thus suggest that bioethicists, lawyers and policy‐makers should consider whether this individualistic approach is still valid and applicable. (shrink)

This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer. 50 were invited to participate. 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; the (...) idea of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow ‘common sense’ were judged to be imprudent. Family members who declined testing were discussed negatively by participants. The article addresses what is ethically problematic about how test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners’ decisions by expressing a preference for or defending choice over responsibility. The ‘right not to know’ seemed an important moral construct to help ethically manage unpopular decisions made by close family who declined testing. In light of this research, the erosion of the ‘right not to know’ in the genomic age could have subtle yet profound consequences for family relationships. (shrink)

Misattributed paternity or ‘false’ paternity is when a man is wrongly thought, by himself and possibly by others, to be the biological father of a child. Nowadays, because of the progression of genetics and genomics the possibility of finding misattributed paternity during familial genetic testing has increased. In contrast to other medical information, which pertains primarily to individuals, information obtained by genetic testing and/or pedigree analysis necessarily has implications for other biologically related members in the family. Disclosing or not (...) a misattributed paternity has a number of different biological and social consequences for the people involved. Such an issue presents important ethical and deontological challenges. The debate centres on whether or not to inform the family and, particularly, whom in the family, about the possibility that misattributed paternity might be discovered incidentally, and whether or not it is the duty of the healthcare professional to disclose the results and to whom. In this paper, we consider the different perspectives and reported problems, and analyse their cultural, ethical and legal dimensions. We compare the position of HCPs from an Italian and British point of view, particularly their role in genetic counselling. We discuss whether the Oviedo Convention of the Council of Europe can be seen as a basis for enriching the debate. (shrink)

Although long touted as an ethical and legal requirement, some clinicians still seem to offer less than fully adequate informed consent processes; similarly the counseling of patients and families, particularly about post-intervention scenarios, is often perfunctory at best. Keyed to a narrative of a patient's experience with surgery for a deviated septum, this article reflects on why such less than adequate clinician behaviors tend to occur and what might be done about them. Certain legal misconceptions about informed consent are (...) highlighted in this reflection, as well as why certain clinicians seem to take such a narrow view of their responsibilities to patients. Further reference in this regard is also made to a recently constructed module on informed consent for medical residents. In it, though legal requirements for informed consent are reviewed, the basic perspective taken regards informed consent as a clinical intervention that pursues certain basic goods and values, only one of which lies in determining when legal closure for such processes has occurred. (shrink)

As a mother of two sons with adrenoleukodystrophy the author of this paper writes about her experiences of genetic counselling following the diagnosis. She discusses the dilemmas, emotions and aftermath this knowledge has brought to her family and the roles she played. Personal concerns are raised about the values guiding genetic counselling which, she found, focused on the technical details without considering the ethical implications arising from the new knowledge or the emotional dilemmas of prenatal testing. Some consequences of (...) choice and the value of hope are discussed. She concludes by challenging genetic counsellors to deliver a service which not only provides technical information but is cognisant of the ethical considerations this information may foist upon a family. (shrink)

The aim of this study was to determine men’s perceptions about family planning and how they participate or wish to participate in family planning activities in Mpigi District, central Uganda. Four focus group discussions were conducted with married men and with family planning providers from both the government and private sector. In addition, seven key informants were interviewed using a semi-structured interview guide. The results indicate that men have limited knowledge about family planning, that family (...) planning services do not adequately meet the needs of men, and that spousal communication about family planning issues is generally poor. However, almost all men approved of modern family planning and expressed great interest in participating. The positive change of the beliefs and attitudes of men towards family planning in the past years has not been recognized by family planning programme managers, since available services are not in line with current public attitudes. A more couple-oriented approach to family planning is needed. Measures could include, for example, recruiting males as family planning providers, offering more family planning counselling for couples, and promoting female-oriented methods with men and vice versa. (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)

This book defends the fundamental place of the marital family in modern liberal societies. While applauding modern sexual freedoms, John Witte, Jr also defends the traditional Western teaching that the marital family is an essential cradle of conscience, chrysalis of care, and cornerstone of ordered liberty. He thus urges churches, states, and other social institutions to protect and promote the marital family. He encourages reticent churches to embrace the rights of women and children, as Christians have long (...) taught, and encourages modern states to promote responsible sexual freedom and family relations, as liberals have long said. He counsels modern churches and states to share in family law governance, and to resist recent efforts to privatize, abolish, or radically expand the marital family sphere. Witte also invites fellow citizens to end their bitter battles over same-sex marriage and tend to the vast family field that urgently needs concerted attention and action. (shrink)

A current trend in bioethics considers genetic information as family property. This paper uses a logical approach to critically examine Matthew Liao’s proposal on the familial nature of genetic information as grounds for the duty to share it with relatives and for breach of confidentiality by the geneticist. The authors expand on the topic by examining the relationship between the arguments of probability and the familial nature of genetic information, as well as the concept of harm in the context (...) of genetic risk. Lastly, they examine the concept of harm in relation to the type of situations w the potential recipient of the information is not the person directly affected by the risk. (shrink)

Currently, boys growing up in urban poverty remain severely under-represented in Australian higher education. To explore this phenomenon, we draw on recent research with boys in Year 12 who will potentially be first-in-family as well as their teachers. The overarching research question framing the chapter is: “How do the school experiences of marginalized young men, living in one of the poorest urban regions in Australia, influence their transition to university?” Research on social mobility has documented that schooling plays a (...) significant role in how students transition to university, where school experiences can significantly influence the success of students from disadvantaged backgrounds. We draw on case study data from one school site, Chipple Senior College, located in the western suburbs of Sydney, to show how certain learner identities are cultivated through institutional tracking as well as teacher–student relationships concerning career guidance counselling and mentorship. Specifically, we identify certain divergences between how teachers view the transition journey of these boys, compared with how the boys themselves see it. The findings indicate discourses of gender—as well as institutional practices—play a significant role in orienting these young men toward their futures. (shrink)

Background: Relatively little is known about neonatologists' roles in helping families navigate the difficult decision to attempt or withhold resuscitation for a neonate delivering at the threshold...