Contributions to this study are drawn both from health professionals engaged in genetic counselling and from observers and critics with backgrounds in law, philosophy, biology, and the social sciences. This diversity will enable health professonals to examine their activities with a fresh eye, and will help the observer-critic to understand the ethical problems that arise in genetic counselling practice, rather than in imaginary encounters. Most examinations of the ethical issues raised by genetics are concerned in a (...) broad sense with the application of new technology to human reproduction. This volume focuses on genetic counselling and screening as such, providing valuable insights for the health professional, social scientist, philosopher, lawyer, and bioethicist. (shrink)

This essay examines the possible systematic bias against the disabled in the structure and practice of genetic counseling. Finding that the profession's “nondirective” imperative remains problematic, the authors recommend that methodology developed by feminist standpoint epistemology be used to incorporate the perspective of disabled individuals in genetic counselors' education and practice, thereby reforming society's view of the disabled and preventing possible negative effects of genetic counseling on the self-concept and material circumstance of disabled individuals.

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.

The practice of prenatal diagnosis has brought with it the utilization of pregnancy termination as a preventive approach. In this paper the genetic/teratologic, fetal and maternal indications for termination of pregnancy used in Hungary are described, as well as the legal requirements and the proposed mode of termination at the different stages of gestation. The author is the director of the largest prenatal genetic counseling service in Hungary. Keywords: elective abortion, medico-legal aspects, prenatal diagnosis, genetic disorders, Hungary, (...) bioethics CiteULike Connotea Del.icio.us What's this? (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 ArgumentThe claim that x is a form of eugenics is frequently used as if it were a knockdown argument against x. Genetic counseling has tried to distance itself from eugenics by presenting itself as facilitating choice. Its success in this attempt has been challenged. The argument however is not a knockdown one and there is scope for some mediation between autonomy and public health goals in genetics.

Genetic counseling is viewed as a therapeutic interrelationship between genetic counselors and their clients. In a previous relational ethics research project, various themes were identified as key components of relational ethics practice grounded in everyday health situations. In this article the relational ethics approach is further explored in the context of genetic counseling to enhance our understanding of how the counselor-client relationship is contextually developed and maintained. Qualitative interviews were conducted with six adult clients undergoing genetic (...) counseling for predictive testing. Engagement, dialogue and presence were revealed as relevant to genetic counselor-client relationships. A relational ethics approach in genetic counseling challenges the concept of nondirectiveness and may enhance the outcome of counseling for both counselor and client. (shrink)

This article analyzes narrative illustrations in genetic counseling textbooks as a way of understanding professional habitus--the dispositions that motivate professional behavior. In particular, this analysis shows that there are significant differences in how the textbooks' expository and narrative portions represent Down syndrome, genetic counseling practice, and patient behaviors. While the narrative portions of the text position the genetic counseling profession as working in service to the values of genetic medicine, the expository portions represent genetic counselors (...) as neutral parties. Ultimately, this article argues that this ambiguity is harmful to the production of a professional habitus that is consistent with espoused professional values concerning respect for persons with disabilities and the promotion of psychosocial counseling. (shrink)

: 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)

ABSTRACT When misattributed paternity is discovered in the course of genetic testing, a genetic counselor is presented with a dilemma concerning whether to reveal this information to the clients. She is committed to treating the clients equally and enabling informed decision making, but disclosing the information may carry consequences for the woman that the counselor cannot judge in advance. A frequent suggestion aimed at avoiding this problem is to include the risk of discovering nonpaternity in the informed consent (...) process for counseling. In this paper I argue that such a move does not resolve the problem, because the conflict hinges on the interpretation of equality on which the counselor operates. Given the principles of genetic counseling, neither construal of equality yields a satisfactory solution to the conflict. In fact, I conclude that including nonpaternity in informed consent is not endorsed by either view, and we are still left with the question of what to do should nonpaternity be discovered. I suggest a compromise position concerning disclosure, involving revealing relevant genetic information but withholding nonpaternity when possible. (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)

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)

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)

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)

Book reviewed in this article: All God's Mistakes: Genetic Counseling in a Pediatric Hospital. By Charles L. Bosk.

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)

Genetic counselling is an important aspect of prenatal care in many developed countries. This tendency has also begun to emerge in Br.

ArgumentThis paper examines the intertwined relations between eugenics and medical genetics from a Swedish perspective in the 1940s and 1950s. The Swedish case shows that a rudimentary form of genetic counseling emerged within eugenic practices in the applications of the Swedish Sterilization Act of 1941, here analyzed from the phenomenon of “heredophobia” (ärftlighetsskräck). At the same time genetic counseling also existed outside eugenic practices, within the discipline of medical genetics. The paper argues that a demand for genetic (...) counseling increased in the 1940s and 1950s in response to a sense of reproductive responsibility engendered by earlier eugenic discourse. The paper also questions the claim made by theoreticians of biopolitics that biological citizens have emerged only during the last decades, especially in neoliberal societies. From the Swedish case it is possible to argue that this had already happened earlier in relation to the proliferation of various aspects of eugenics to the public. (shrink)

Genetic counselors are on the front lines of the genetic revolution, presented with tests of varying predictive values and reliability, unfair testing distribution mechanisms, tests for conditions where no treatment exists, and companies that oversell the usefulness of their tests to physicians and nurses. Many scholars, both genetic testing task forces as well as the newly formed National Bioethics Advisory Commission, have all noted that genetic counseling programs and services are critical for adequate genetic testing. (...) At the same time, in our own work at the University of Pennsylvania we have encountered many requests for new materials for training genetic counselors in ethics and providing ethics resources for genetic counseling. One of us has noted elsewhere that it is crucial that resources from the Human Genome Project, the Centers for Disease Control, and other public agencies be devoted to providing better resources for genetic counselors facing difficult ethical issues. Although the American Board of Genetic Counseling requires that training programs include some formal coursework in ethics, many wonder whether enough is being done to prepare genetic counselors for an ever-tougher job, and in particular there has been much concern expressed about whether is an outmoded ideal that hampers this profession as it attempts to grow and identify the value of its practice. On the basis of many comments to us by genetic counselors and on the basis of our review of the current literature, we hypothesized that accredited genetic counseling training programs are poised at the turn of the century to begin planning a new approach toteaching the philosophy of genetic counseling, one that integrates philosophical, theoretical, and ethical training throughout thecurriculum in genetic counseling. (shrink)

"The Bush administration and Congress are in concert on the goal of developing a fleet of unmanned aircraft that can reduce both defense costs and aircrew losses in combat by taking on at least the most dangerous combat missions. Unmanned combat aerial vehicles (UCAVs) will be neither inexpensive enough to be readily expendable nor-- at least in early development-- capable of performing every combat mission alongside or in lieu of manned sorties. Yet the tremendous potential of such systems is widely (...) recognized, and allies as well as potential adversaries are moving quickly to mount their own research and development programs. The United States is committed to fielding UCAV capabilities by 2010, principally for the missions of suppression of enemy air defense and deep strike, which are among the highest risk tasks for the Air Force and naval aviation."--Overview. (shrink)

El diagnóstico prenatal como opción reproductiva más difundida a nivel mundial se refiere a métodos para investigar la salud del feto. Entre sus objetivos está la detección de malformaciones congénitas en la vida fetal y permitir la interrupción del embarazo. Un enfoque ético, basado en el respeto por las personas y a la confidencialidad, evitando el daño y respetando la autonomía, son las claves de un asesoramiento genético óptimo. Se realizó una revisión bibliográfica con el objetivo de exponer algunas consideraciones (...) éticas en la práctica asistencial de la genética médica, a partir de los principios fundamentales de la bioética vinculados al diagnóstico prenatal y al proceso de asesoramiento genético, ya que estos aspectos éticos en la práctica de la genética médica es una temática relativamente joven que ha estado influida por el desarrollo de la bioética y la solución de los dilemas éticos y sociales en la práctica médica. Prenatal diagnosis, as the world widest spread reproductive option, refers to fetus health research methods. Fetal life congenital malformation detection and allowing termination of pregnancy are among its main objectives. An ethical approach, based on respect for people and for confidentiality, avoiding hurt and respecting autonomy, is the key towards optimum genetic counseling. A bibliographic review was conducted. Its objective is to set out some ethical considerations in medical genetics health care practice starting from bioethics fundamental principles, which are linked to prenatal diagnosis and to the genetic counseling process; since dealing with issues related to these ethical aspects in medical genetics practice is a relatively new subject that has been influenced by the development of bioethics and the solution to ethical and social dilemmas in medical practice. (shrink)

… [T]he question “valuable to what end?” is one of extraordinary complexity. For example, something obviously valuable in terms of the longest possible survival of a race would by no means have the same value if it were a question of developing a more powerful type. The welfare of the many and the welfare of the few are radically opposite ends.There is no question that genetic engineering in many forms… will come about. It is a general rule that whatever (...) is scientifically feasible will be attempted. The application of these technics must, however, be examined from the point of view of ethics, individual freedom and coercion. Both the scientists directly involved and, perhaps more important, the political and social leaders of our civilization must exercise utmost caution in order to prevent genetic, evolutionary and social tragedies. (shrink)

Book reviewed in this article: Coping with Genetic Disorders. By John C. Fletcher. Genetics, Ethics and Parenthood. Edited by Karen Lebacqz. Screening and Counseling for Genetic Conditions: The Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs. A report of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.

_Background:_ Breast Cancer susceptibility genes 1 and 2 are implicated in hereditary breast and ovarian cancer and women can test for the presence of these genes prior to developing cancer. The goal of this study is to examine psychological distress, quality of life, and active coping mechanisms in a sample of women during the pre-test stage of the genetic counseling process, considering that pre-test distress can be an indicator of post-test distress. We also wanted to identify if subgroups of (...) women, defined based on their health status, were more vulnerable to developing distress during the genetic counseling process. _Methods:_ This study included 181 female participants who accessed a Cancer Genetic Counseling Clinic. The participants were subdivided into three groups on the basis of the presence of a cancer diagnosis: Affected patients, Ex-patients, and Unaffected participants. Following a self-report questionnaire, a battery of tests was administered to examine psychological symptomatology, quality of life, and coping mechanisms. _Results:_ The results confirm that the genetic counseling procedure is not a source of psychological distress. Certain participants were identified as being more vulnerable than others; in the pre-test phase, they reported on average higher levels of distress and lower quality of life. These participants were predominantly Ex-patients and Affected patients, who may be at risk of distress during the counseling process. _Conclusions:_ These findings highlight that individuals who take part in the genetic counseling process are not all the same regarding pre-test psychological distress. Attention should be paid particularly to Ex-patients and Affected patients by the multidisciplinary treating team. (shrink)

Respect for patient autonomy has served as the dominant ethical principle of genetic counselling, but as we move into a genomic era, it is time to actively re-examine the role that this principle plays in genetic counselling practice. In this paper, we argue that the field of genetic counselling should move away from its emphasis on patient autonomy and toward the incorporation of a more balanced set of principles that allows counsellors to offer clear (...) guidance about how best to obtain or use genetic information. We begin with a brief history of how respect for patient autonomy gained such emphasis in the field and how it has taken on various manifestations over time, including the problematic concept of nondirectiveness. After acknowledging the field's preliminary move away from nondirectiveness, we turn to a series of arguments about why the continued dominance of patient autonomy has become untenable given the arrival of the genomic era. To conclude, we describe how a more complete set of bioethical principles can be adapted and used by genetic counsellors to strengthen their practice without undermining patient autonomy. (shrink)

The author, a scientist working in clinical genetics, outlines the functions of the genetic counsellor and discusses some of the ethical issues involved. The paper is based on one given at a London Medical Group conference.

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)

The article aims at organizing multifaceted discourse on the concept of nondirectiveness in the practice of genetic counseling. The analysis of areas where nondirectiveness was invoked and discussed reveals the problematic confusion of different meanings of the term that often leads to false conclusions about the relations between the professional standards and the practice of genetic counseling. The article offers clear and comprehensive description of different approaches to nondirectiveness and various ideas associated with the term. Normative consequences of (...) various meanings attributed to nondirectiveness are explored. The article concludes by presenting important but unsolved problems regarding both theory (the meaning of nondirectiveness and its operational definition) and practice of genetic counseling (the scope and content of the norm of nondirective counseling). (shrink)

: Common wisdom in genetic counseling, which is supported by Biesecker, holds that counselors should strive not to influence their clients' decision making. Such a presumption of nondirectiveness is challenged in this commentary.

Nondirective genetic counseling developed as a means of promoting informed and independent decision-making. To the extent that it minimizes risks of coercion, this counseling approach effectively respects client autonomy. However, it also permits clients to make partially informed, poorly reasoned or ethically questionable choices, and denies counselors a means of demonstrating accountability for the use of their services. These practical and ethical tensions result from an excessive focus on noncoercion while neglecting the contribution of adequate information and deliberative competence (...) to autonomous decision-making. A counseling approach that emphasizes the role of deliberation may more reliably produce thoroughly reasoned decisions. In such an approach, characterized by dialogue, counselors are responsible for ensuring that decisions are fully informed and carefully deliberated. Counseling remains nonprescriptive, but in the course of discussion counselors may introduce unsolicited information and/or challenge what they believe are questionable choices. By this means clients can be better assured that the decisions they make are fully considered, while counselors demonstrate a limited degree of professional accountability. (shrink)