A new decade of community genetics: old and new challenges
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EDITORIAL
A new decade of community genetics: old and new challenges Jörg Schmidtke 1 & Martina C. Cornel 2
# Springer-Verlag GmbH Germany, part of Springer Nature 2019
“Community Genetics“ is a term coined by Coldwell et al. in 1975 to describe the need and value of a genetic service to the community (Coldwell et al. 1975; Ten Kate 2012). It was further developed as a distinct concept in medicine in the early 1980s (Modell and Kuliev 1998) and gained momentum with new possibilities for carrier screening in the 1990s (Modell 1990). The World Health Organization Regional Office for Europe described Community Genetics services in Europe in 1991, including primary prevention, prenatal diagnosis and neonatal screening (Modell et al. 1991). Community Genetics was then seen by some authors as a public health activity (Modell and Kuliev 1998). At the same time experts with a background in clinical genetics developed an interest for the field and a journal Community Genetics was launched in 1998, with the clinical geneticist Leo ten Kate as its founding editor. Twelve years later, this journal was discontinued. An understanding had emerged of “community genetics” as an activity distinct from genetics in public health (Schmidtke and ten Kate 2010), although it was conceded that community genetics and public health genetics had much in common. The difference was found in their aims: whereas the latter aims to improve the population’s health, the former focuses on the well-being of the individual. A consensus definition of community genetics was reached by an informal group of scientists (Ten Kate et al. 2010); they emphasized the benefit of genetic service provision to the individuals in a community as the primary goal, including their reproductive autonomy, but recognized that the area of reproductive
* Martina C. Cornel [email protected] Jörg Schmidtke [email protected] 1
Institute of Human Genetics, Hannover Medical School, Carl-Neuberg-Str. 1, D-30623 Hannover, Germany
2
Clinical Genetics, Section Community Genetics, Amsterdam Public Health Research Institute, Amsterdam UMC, Vrije Universiteit Amsterdam, De Boelelaan, 1117 Amsterdam, The Netherlands
medicine bears potential for conflict (Schmidtke and ten Kate 2010). This conflict has continued unabated (Schmidtke and Cornel 2019), and the Journal of Community Genetics is committed to open discussion of such areas of ethical dissent. Community Genetics claims a multi-, inter- and transdisciplinary scope, and in the 10 years of its existence this journal has redeemed this claim. It has published a total of 435 original articles, short communications, country reports, reviews, editorials and letters to the editor covering all subareas of the field including genetic screening, genetic literacy and education, as well as ethical, legal, social and economic issues. The journal has published a series of eight distinguished special issues: Genetics and Democracy, April 2012, guest edited by Maria Hedlund, Niclas Hagen and Ulf Kristoffersson, https://
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