Abstract
To carry out quality management of genetic counseling, it is important to know what genetic counseling exactly means and who the players are. The term "genetic counseling" was first defined by Reed in 1947. It describes a communication process dealing with genetic facts and psychosocial aspects and is an education process, too. It has always been understood in the context of individual and family problems, and is unrelated to eugenics. In 1975 the Ad Hoc Committee of the American Society of Human Genetics published a more detailed description. With the development of new diagnostic techniques and methods in human genetics, the requirements of genetic counseling and its contents changed. Today a genetic counselor has to apply diagnostic, predictive, susceptibility, pharmacogenetic, carrier, prenatal, and preimplantation testing, as well as genetic screening. The German Human Genetic Examination Act (Genetic Diagnosis Act - GenDG) and national and international associations recommend to embed genetic testing into genetic counseling. Based on experiences of the author, some examples of pitfalls in genetic counseling are illustrated, as there are so many individual situations and requests that it seems impossible to carry out quality management. Nevertheless, the Commission for Quality in Genetic Counseling and Clinical Genetics of the Professional Association of German Human Geneticists started a pilot ring trial in 2018 with a given counseling situation. The task was to write the human genetics comment with the help of a checklist containing all issues necessary. The evaluation was conducted with the help of a catalogue of criteria which had been established beforehand and a score adjusted to the individual situation. The first genuine pilot trial was launched in 2020. It represents a possibility for quality management in genetic counseling.
Highlights
To carry out quality management of genetic counseling, it is important to know what genetic counseling exactly means and who the players are
The term “genetic counseling” was first defined by Reed in 1947. It describes a communication process dealing with genetic facts and psychosocial aspects and is an education process, too
Based on experiences of the author, some examples of pitfalls in genetic counseling are illustrated, as there are so many individual situations and requests that it seems impossible to carry out quality management
Summary
Abstract: To carry out quality management of genetic counseling, it is important to know what genetic counseling exactly means and who the players are. Reed (1910–2003) coined the term “genetic counseling” to describe the process of helping families coping with medical and psychological effects of genetic diseases Later he noted what this term means for him: “the term ‘genetic counseling’ occurred to me as an appropriate description of the process which I thought of as a kind of social work without eugenic connotations” [1]. Ethical aspects imply that genetic counseling has to be voluntary, non-directive, non-active, focused on the individual or on the family, frank, and unbiased
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