“I am happy to be alive, but I prefer to have children without my chronic disease”: chronically ill persons’ views on reproduction and genetic testing for their own condition
In Germany, the debate on preimplantation and prenatal testing is heavily influenced by the idea of an antagonism between prospective parents and their potential children. Underlying this antagonism is the assumption that prospective parents follow an ableist logic and do not regard the lives of chi...
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| Language: | English |
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Taylor & Francis Group
2024-12-01
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| Series: | New Genetics and Society |
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| Online Access: | https://www.tandfonline.com/doi/10.1080/14636778.2024.2332299 |
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| author | Anika König Stefan Reinsch |
| author_facet | Anika König Stefan Reinsch |
| author_sort | Anika König |
| collection | DOAJ |
| description | In Germany, the debate on preimplantation and prenatal testing is heavily influenced by the idea of an antagonism between prospective parents and their potential children. Underlying this antagonism is the assumption that prospective parents follow an ableist logic and do not regard the lives of children with a chronic illness as “worth living”. Taking the example of two rare genetic illnesses, Marfan Syndrome and Cystic Fibrosis, we investigate how persons who themselves are affected by these conditions view preimplantation or prenatal testing for their condition in the context of reproductive decision-making. Our empirical research shows that chronically ill patients’ appreciation of their own life as a “life worth living” does not always translate into an unequivocal wish and readiness to give birth to a child that is affected by their condition as well and argue that taking their views into consideration adds an additional level of complexity to the debate. |
| format | Article |
| id | doaj-art-909c480736d14695a58ec04fc0f6dc2e |
| institution | OA Journals |
| issn | 1463-6778 1469-9915 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | Taylor & Francis Group |
| record_format | Article |
| series | New Genetics and Society |
| spelling | doaj-art-909c480736d14695a58ec04fc0f6dc2e2025-08-20T02:34:31ZengTaylor & Francis GroupNew Genetics and Society1463-67781469-99152024-12-0143110.1080/14636778.2024.2332299“I am happy to be alive, but I prefer to have children without my chronic disease”: chronically ill persons’ views on reproduction and genetic testing for their own conditionAnika König0Stefan Reinsch1Institute for Social and Cultural Anthropology, Freie Universität Berlin, Berlin, GermanyCentre for Health Service Research, Faculty of Health Sciences Brandenburg & Department of Pediatrics at University Hospital Ruppin-Brandenburg, Brandenburg Medical School – Theodor Fontane, Neuruppin, GermanyIn Germany, the debate on preimplantation and prenatal testing is heavily influenced by the idea of an antagonism between prospective parents and their potential children. Underlying this antagonism is the assumption that prospective parents follow an ableist logic and do not regard the lives of children with a chronic illness as “worth living”. Taking the example of two rare genetic illnesses, Marfan Syndrome and Cystic Fibrosis, we investigate how persons who themselves are affected by these conditions view preimplantation or prenatal testing for their condition in the context of reproductive decision-making. Our empirical research shows that chronically ill patients’ appreciation of their own life as a “life worth living” does not always translate into an unequivocal wish and readiness to give birth to a child that is affected by their condition as well and argue that taking their views into consideration adds an additional level of complexity to the debate.https://www.tandfonline.com/doi/10.1080/14636778.2024.2332299Carrier testingPre-Implantation Genetic Testing (PGT)Prenatal Genetic Testing (PNT)GermanyMarfan Syndrome (MFS)Cystic Fibrosis (CF) |
| spellingShingle | Anika König Stefan Reinsch “I am happy to be alive, but I prefer to have children without my chronic disease”: chronically ill persons’ views on reproduction and genetic testing for their own condition New Genetics and Society Carrier testing Pre-Implantation Genetic Testing (PGT) Prenatal Genetic Testing (PNT) Germany Marfan Syndrome (MFS) Cystic Fibrosis (CF) |
| title | “I am happy to be alive, but I prefer to have children without my chronic disease”: chronically ill persons’ views on reproduction and genetic testing for their own condition |
| title_full | “I am happy to be alive, but I prefer to have children without my chronic disease”: chronically ill persons’ views on reproduction and genetic testing for their own condition |
| title_fullStr | “I am happy to be alive, but I prefer to have children without my chronic disease”: chronically ill persons’ views on reproduction and genetic testing for their own condition |
| title_full_unstemmed | “I am happy to be alive, but I prefer to have children without my chronic disease”: chronically ill persons’ views on reproduction and genetic testing for their own condition |
| title_short | “I am happy to be alive, but I prefer to have children without my chronic disease”: chronically ill persons’ views on reproduction and genetic testing for their own condition |
| title_sort | i am happy to be alive but i prefer to have children without my chronic disease chronically ill persons views on reproduction and genetic testing for their own condition |
| topic | Carrier testing Pre-Implantation Genetic Testing (PGT) Prenatal Genetic Testing (PNT) Germany Marfan Syndrome (MFS) Cystic Fibrosis (CF) |
| url | https://www.tandfonline.com/doi/10.1080/14636778.2024.2332299 |
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