of potential recipients on the organ waiting list.34 Dialysis in Korea has also been covered since 1989 and this is similar in France.35 36 In France, genetic testing is not routinely offered to patients, although some could have free access to genetic testing (eg, if they were enrolled in the Genkyst observational cohort study37). In regard to legislative protection, Australia, France and Korea have comprehensive provisions pertaining to consent, autonomy and integrity of the person tested.38 In France, refusal of fetal testing for ADPKD may be due to fear of genetic transmission and the illegality of termination of pregnancy after 12-week conception due to ADPKD.39 No participants mentioned preimplantation genetic diagnosis, which highlights an information gap between countries. Variable perspectives can also be noted depending on the role of the participant regardless of their country of residence. In previous studies, parents have reported largely positive attitudes towards testing for children, while some children became more concerned about their health or the health of their family members.40 41 Younger patients expressed more anxiety around a diagnosis because they feared it could limit their future and were anxious about how quickly their health would decline. Similar perspectives on testing have also been noted with other later onset progressive conditions including Huntington disease, characterised by a motor and cognitive deterioration with unpredictable prognosis leading to similar decisional uncertainty in views about testing.42–44 For patients with Huntington disease, family members could be perceived to have a supportive role or put pressure on making decisions in terms of being presymptomatically tested. They considered the consequences of sharing or withholding information about the diagnosis.45 Some refused testing to avoid unnecessary anxiety before they experienced symptoms of the disease.45 Our findings are consistent with the concepts of multigenerational transmission process in family system theory, which emphasises that an individual’s behaviour is inextricably connected with the attitudes and behaviours learnt from their family.46 47 The multigenerational transmission process can help explain how decisions about testing can be shaped by observing the extent to which family members (particularly parents) suffered the symptoms of ADPKD.46 Some patients believed that their experience might be different from those of their family members and were uncertain about the chance of genetic transmission in family planning, while others were influenced by the adverse impact that ADPKD had on their family. Our study spanned three countries and provided in-depth, diverse and novel insights about testing for ADPKD from a relatively large sample of patients and their caregivers purposively selected to include a range of demographic characteristics. We achieved data saturation, coded the data in the language of the focus groups and used investigator triangulation in the analysis to ensure the themes reflected the breadth and depth of the data. However, there are some potential limitations. We are uncertain about the transferability of the findings to other countries with different healthcare policies on testing. We acknowledge that testing can be a sensitive topic and some views may have been suppressed in the focus group setting which may also explain why there was on July 8, 2022 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2020-038005 on 10 October 2020. Downloaded from 10 Logeman C, et al. BMJ Open 2020;10:e038005. doi:10.1136/bmjopen-2020-038005 Open access limited variation in the perspectives of caregivers versus patients. We discussed testing for disease presence only in patients diagnosed with ADPKD and 31% were receiving kidney replacement therapy. We acknowledge that the findings may not include views of at-risk persons because of ethical reasons. Other limitations include the relatively low number of caregivers and other subgroups (ie, transplant recipients) and being ethically unable to collect demographic characteristics from patients who declined to participate. Our findings can inform ways to better inform and communicate with patients and their families. Knowledge of the available tests, prevention and management may support decision-making. Our findings support the value of genetic counsellors and education sessions prior to testing to help address the potential psychological and social consequences of testing to the individual and the family.45 Kidney Disease Improving Global Outcomes guidelines and the European ADPKD Forum suggest that patients with ADPKD should have access to reproductive counselling.29 48 However, as few as 20%–40% of nephrologists may actually inform their patients about the prenatal and preimplantation genetic diagnostic options due to ethical concerns while 68% of patients with ADPKD believe it should be offered.33 49 Clinicians have articulated similar concerns about testing for ADPKD because of the perceived absence of curative treatment options and the perceived minimal burden on QoL. However, perceptions of testing may change with increasing availability and use of vasopressin receptor antagonists to