1. Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics
- Author
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Carrieri, Daniele, Howard, Heidi C, Benjamin, Caroline, Clarke, Angus J, Dheensa, Sandi, Doheny, Shane, Hawkins, Naomi, Halbersma-Konings, Tanya F, Jackson, Leigh, Kayserili, Hülya, Kelly, Susan E, Lucassen, Anneke M, Mendes, Álvaro, Rial-Sebbag, Emmanuelle, Stefánsdóttir, Vigdís, Turnpenny, Peter D, van El, Carla G, van Langen, Irene M, Cornel, Martina C, Forzano, Francesca, European Society of Human Genetics, Reproductive Origins of Adult Health and Disease (ROAHD), Health Psychology Research (HPR), Karabey, Hülya Kayserili (ORCID 0000-0003-0376-499X & YÖK ID 7945), Carrieri, Daniele, Howard, Heidi C., Benjamin, Caroline, Clarke, Angus J., Dheensa, Sandi, Doheny, Shane, Hawkins, Naomi, Halbersma-Konings, Tanya F., Jackson, Leigh, Kelly, Susan E., Lucassen, Anneke M., Mendes, Alvaro, Rial-Sebbag, Emmanuelle, Stefansdottir, Vigdis, Turnpenny, Peter D., van El, Carla G., van Langen, Irene M., Cornel, Martina C., Forzano, Francesca, European Society of Human Genetics, School of Medicine, Department of Medical Genetics, Human genetics, APH - Personalized Medicine, APH - Quality of Care, and Amsterdam Reproduction & Development (AR&D)
- Subjects
0301 basic medicine ,Medical Ethics ,medicine.medical_specialty ,Genetic counseling ,Genetic Counseling ,030105 genetics & heredity ,Medicinsk etik ,Biochemistry and molecular biology ,Genetics and heredity ,03 medical and health sciences ,Recontacting ,Health care ,Genetics ,medicine ,media_common.cataloged_instance ,Humans ,European Union ,Genetic Testing ,European union ,Genetics (clinical) ,Societies, Medical ,media_common ,Genetic testing ,Duty to Recontact ,medicine.diagnostic_test ,business.industry ,Public consultation ,Public relations ,B710 ,Human genetics ,030104 developmental biology ,Medical genetics ,Duty ,Utility ,Genome ,Professionals ,Challenges ,Consent ,Views ,Practice Guidelines as Topic ,business ,Medical ethics - Abstract
Technological advances have increased the availability of genomic data in research and the clinic. If, over time, interpretation of the significance of the data changes, or new information becomes available, the question arises as to whether recontacting the patient and/or family is indicated. The Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), together with research groups from the UK and the Netherlands, developed recommendations on recontacting which, after public consultation, have been endorsed by ESHG Board. In clinical genetics, recontacting for updating patients with new, clinically significant information related to their diagnosis or previous genetic testing may be justifiable and, where possible, desirable. Consensus about the type of information that should trigger recontacting converges around its clinical and personal utility. The organization of recontacting procedures and policies in current health care systems is challenging. It should be sustainable, commensurate with previously obtained consent, and a shared responsibility between healthcare providers, laboratories, patients, and other stakeholders. Optimal use of the limited clinical resources currently available is needed. Allocation of dedicated resources for recontacting should be considered. Finally, there is a need for more evidence, including economic and utility of information for people, to inform which strategies provide the most cost-effective use of healthcare resources for recontacting., NA
- Published
- 2019