prevent the progression of ADPKD.50 Ongoing clinical trials may provide additional options for treatment to slow progression.51–53 Concerns about discrimination in regard to disclosure of genetic status should also be addressed.54 For some patients with ADPKD, testing could empower them to take charge of their health while for others, receiving a confirmed diagnosis of ADPKD causes unnecessary anxiety over a disease that they limited control over. Testing positive for ADPKD could jeopardise employment opportunities for patients and complicate family planning and dynamics. Providing access to education and genetic counselling in people at risk of ADPKD and their family, and psychosocial support after receiving the test results, are suggested to provide individuals with the capacity to make informed decisions and to empower them for self-management. Author affiliations 1 School of Public Health, The University of Sydney, Sydney, New South Wales, Australia 2 Centre for Kidney Research, Westmead Hospital, Westmead, New South Wales, Australia 3 Australasian Kidney Trials Network, University of Queensland at Princess Alexandra Hospital, Brisbane, Queensland, Australia 4 Department of Nephrology, Princess Alexandra Hospital, Woolloongabba, Queensland, Australia 5 Department of Nephrology Hypertension, Centre Hospitalier Régional Universitaire de Tours, Tours, France 6 Centre for Transplant and Renal Research, The Westmead Institute for Medical Research, Sydney, New South Wales, Australia 7 Department of Renal Medicine, Westmead Hospital, Westmead, New South Wales, Australia 8 College of Medicine and Public Health, Flinders University Faculty of Medicine, Nursing and Health Sciences, Adelaide, South Australia, Australia 9 Academic Nephrology Unit, The Henry Wellcome Laboratories for Medical Research, University of Sheffield Medical School, Sheffield, UK 10Department of Medicine, University of Chicago, Chicago, Illinois, USA 11Internal Medicine, Seoul National University, Seoul, South Korea 12Head Office, Polycystic Kidney Disease Foundation of Australia, Sydney, New South Wales, Australia 13School of Medicine, Fu Jen Catholic University Hospital, New Taipei City, Taiwan 14Department of Internal Medicine, National Taiwan University Hospital, Taipei, Taiwan 15Faculty of Medical Sciences, University Medical Center Groningen, Groningen, The Netherlands 16Division of Nephrology, Tufts University School of Medicine, Boston, Massachusetts, USA 17Head Office, PKD International, Geneva, Switzerland 18London Office, PKD International, London, UK 19Department of Nephrology and Hypertension, Mayo Clinic, Rochester, New York, USA 20Kidney Health Initiative, The Voice of the Patient, Washington, DC, USA 21Divisions of Nephrology and Genomic Medicine, University of Toronto, Toronto, Ontario, Canada 22Nephrology, Monash Medical Centre Clayton, Melbourne, Victoria, Australia 23Department of Renal Medicine, Princess Alexandra Hospital, Woolloongabba, Queensland, Australia 24Australasian Kidney Trials Network, The University of Queensland, Saint Lucia, Queensland, Australia 25School of Medicine, University of Queensland, Brisbane, Queensland, Australia 26Department of Nephrology and Clinical Immunology, Centre Hospitalier Régional Universitaire de Tours, Tours, France 27Internal Medicine, Seoul National University Hospital, Jongno-gu, South Korea 28Department of Internal Medicine, Keimyung University College of Medicine, Daegu, South Korea 29Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia 30School of Public Health, University of Sydney, Sydney, New South Wales, Australia 31Discipline of Genetic Medicine, The University of Sydney Medical School, Sydney, New South Wales, Australia 32Clinical Genetics, The Sydney Children's Hospitals Network Randwick and Westmead, Westmead, New South Wales, Australia Twitter Tess Harris @pkd_int, Karine E Manera @KarineManera and Allison Tong @ allisontong1 Acknowledgements We are grateful to all the patients and their caregivers who generously gave their time to share their insights and perspectives. Contributors Conceptualisation: C. Project administration: TG, MH, AJ, KEM. Funding acquisition: AT, DJ, TG, MH, KEM, YC, AV, BS. All authors have read and agreed to the published version of the manuscript. Funding The study was financially supported by a grant from Polycystic Kidney Disease Foundation of Australia and the National Health and Medical Research Council (NHMRC) Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) Program (1092957), UMR INSERM 1246-SPHERE Methods in Patientcentered Outcomes and Health Research, and Research of Korea Center for Disease Control and Prevention (2016E3300201). AT is supported by an NHMRC Fellowship (1106716). DJ is supported by an NHMRC Practitioner Fellowship (1117534). TG is supported by an NHMRC Postgraduate Scholarship (1169149). MH is funded as a Post-Doctoral Fellow through the NHMRC BEAT-CKD Program Grant (APP1092957). KEM is supported by an NHMRC Postgraduate Scholarship (1151343). YC is supported by an NHMRC Early Career Fellowship (1126256). AV receives grant support from the NHMRC Medical Postgraduate