The Directiveness that Dare Not Speak Its Name. Views and Attitudes of Polish Clinical Geneticists toward the Nondirectiveness Principle (original) (raw)
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European Journal of Human Genetics, 2008
The aim of this article is to review the national regulations and practices of genetic counselling in 38 European countries, and to examine how well they intersect the ideals of genetic counselling defined in international guidelines. Using an electronic survey, representatives of the National Societies of Human Genetics in 29 countries, and appropriate contact persons for the field of genetic counselling in 9 other countries, were asked about the regulations and practices. The answers showed that consent, confidentiality, genetic counselling in the context of prenatal diagnosis, those professionals who may perform genetic counselling, and non-directiveness were the topics most often either agreed upon among professionals or regulated in those countries. These are also among the key aspects of ideal genetic counselling, based on international guidelines. Counselling in the context of susceptibility testing for multifactorial diseases, counselling people from ethnic minorities and recontacting the counsellees, on the contrary, were topics regulated or guided by generally applied practices in only few countries. Many of the answers expressed a desire for more regulation of genetic counselling, and that more uniform practices of education and organization of genetic counselling would be welcome in Europe.
Journal of Genetic Counseling, 1997
As part of an international study of ethics and genetics, we present a comparison between survey responses of 43 East German and 212 West German geneticists to anonymous questionnaires. Both groups indicated that the experience of the Third Reich has impacted the genetics profession in Germany today. East German geneticists reported more directive counseling practices after prenatal diagnosis for 10 of 26 conditions than those from West Germany. When asked to give their personal opinions about pregnancy termination, East Germans were more accepting of abortion than their West German colleagues for 7 of 24 fetal indications. In addition, there were significant differences between the two sample groups for 8 questions on the perception of disability and society. Discussions with German geneticists suggest that, while both groups were affected by Germany's experience of Nazism, different abortion laws, political systems, and ideas about the doctor-patient relationship in former East and West Germany may account for discrepancies in reported genetic counseling practices and in attitudes toward abortion and disability.
Ethical and Professional Challenges of Genetic Counseling – the Case of Austria
Journal of Genetic Counseling, 2013
Genetic counseling is gaining in importance with the increasing application of genetic testing for diagnosis and clinical treatment. Genetic counseling often raises ethical and professional challenges and prior research has categorized them into 16 domains. The purpose of this study was to analyze the situation in Austria on the basis of these challenges and discuss it in the national and international context. While in some countries there is a special profession for genetic counseling, in Austria it is provided by medical geneticists or other physicians in the context of their specialization. Psychosocial professionals might be consulted or brought in if necessary. Results from 95 survey respondents (including physicians and psychosocial professionals) revealed a greater interest in the topic of genetic counseling by medical specialists other than medical geneticists. The most frequently encountered challenges among physicians were informed consent, organizational constraints, withholding information, and attaining/maintaining proficiency. The psychosocial professionals experienced maintaining proficiency and organizational constraints as the prevalent challenges. Additional findings and practice implications are presented.
Non-directive Genetic Counselling—Respect for Autonomy or Unprofessional Practice?
Annals of the Academy of Medicine- …, 2011
Historically, genetic counselling was developed in the West and in the fi eld of neonatal medicine, and a non-directive approach has been its central ethos since the 1950s to 60s. In today's changing world, the question of whether non-directive genetic counselling with its emphasis on patient autonomy may in some occasions be perceived as unprofessional practice. Through these 4 case studies in cancer genetic counselling, we seek to highlight the conundrums, dilemmas and various other considerations of patients and their families faced during the genetic counselling process. We also address the pitfalls of a 'one-size fi ts all' approach of non-directive counselling and how we could best practice cancer genetic counselling in the Singapore context, taking into consideration respect for patient autonomy and healthcare professionalism.
The role of beneficence in clinical genetics: Non-directive counseling reconsidered
Theoretical Medicine and Bioethics, 1989
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 beneficence. 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.
Value neutrality in genetic counseling: An unattained ideal
2001
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. Concisely, the scope of this paper includes the role of the genetic counselor in facilitating a family planning decision-making process. In the expression of genetic risks, the authority of medical language impacts a person's understanding of epidemiological data. By claiming that "value neutrality" is an ethos of genetic counselors, this implies that there exists a distinction between these scientific facts and personal values; this assumption is fallacious and should not be promoted to patients as a truth within the professional ethos statement of genetic counseling.
Noninvasive Prenatal Genetic Diagnosis and Eugenic Aims. A Bioethical Reflection
The Linacre quarterly, 2012
ABSTRACT The use of techniques of analysis of fetal nucleic acid present in maternal peripheral blood for noninvasive prenatal genetic diagnosis (NIPD) is a reality in clinical practice in the case of certain diseases. In the coming years, it will become part of routine prenatal screening and diagnostic techniques for fetal diagnosis. A bioethical reflection on the possible difficulties and problems of the use of these techniques is necessary. On one hand, these techniques will result in reduced costs of screening, an increase in the number of disabled fetuses detected, and a decrease in the number of indirect abortions caused by invasive techniques. On the other hand, the widespread use of NIPD could decrease the autonomy of women in the decision-making process; health authorities could use NIPD as a means of eugenic prevention of genetic diseases, for example, in Down syndrome cases; and finally, NIPD could increase the image of the disabled person as an individual that has to be excluded from society. For this reason physicians play an important role in the process of pre-diagnosis and post-diagnosis genetic counseling. As a result, we conclude that the use of NIPD to diagnose the existence of genetic diseases in the fetus in order to decide—in the case of a positive result—whether or not to perform an abortion implies and includes in itself the conditions that characterize a negative moral assessment.