Recontacting or not recontacting? A survey of current practices in clinical genetics centres in Europe

Abstract

Advances in genomic medicine are improving diagnosis and treatment of some health conditions, and the question of whether former patients should be recontacted is therefore timely. The issue of recontacting is becoming more important with increased integration of genomics in 'mainstream' medicine. Empirical evidence is needed to advance the discussion over whether and how recontacting should be implemented. We administered a web-based survey to genetic services in European countries to collect information about existing infrastructures and practices relevant to recontacting patients. The majority of the centres stated they had recontacted patients to update them about new significant information; however, there were no standardised practices or systems in place. There was also a multiplicity of understandings of the term 'recontacting', which respondents conflated with routine follow-up programmes, or even with post-test counselling. Participants thought that recontacting systems should be implemented to provide the best service to the patients and families. Nevertheless, many barriers to implementation were mentioned. These included: lack of resources and infrastructure, concerns about potential negative psychological consequences of recontacting, unclear operational definitions of recontacting, policies that prevent healthcare professionals from recontacting, and difficulties in locating patients after their last contact. These barriers are also intensified by the highly variable development (and establishment) of the specialties of medical genetics and genetic counselling across different European countries. Future recommendations about recontacting need to consider these barriers. It is also important to reach an 'operational definition' that can be useful in different countries.

The Responsibility to Recontact Research Participants after Reinterpretation of Genetic and Genomic Research Results

“…43 A European survey of 105 genetics centers demonstrated that 95% (100/105) of clinical centers have recontacted patients; of these, 37 centers did so routinely, whereas 63 recontacted patients occasionally. 44 Common reasons justifying recontact efforts included availability of a new test (n ¼ 55), new clinical guidance (n ¼ 33), and reclassification of a VUS (n ¼ 26) to new results from a prior test (n ¼ 17). 44 Many European centers (41 of 105) have a formal system in place for recontacting patients; such systems include: clinicians seeking consent at first visit, patients requesting or agreeing to future contact, and clinicians recontacting patients without prior consent (this was usually done when results were clinically actionable [n ¼ 44] or were medically relevant to a relative [n ¼ 16]).…”

“…44 Common reasons justifying recontact efforts included availability of a new test (n ¼ 55), new clinical guidance (n ¼ 33), and reclassification of a VUS (n ¼ 26) to new results from a prior test (n ¼ 17). 44 Many European centers (41 of 105) have a formal system in place for recontacting patients; such systems include: clinicians seeking consent at first visit, patients requesting or agreeing to future contact, and clinicians recontacting patients without prior consent (this was usually done when results were clinically actionable [n ¼ 44] or were medically relevant to a relative [n ¼ 16]). 44 Interestingly, Beunders et al 36 compared the feasibility and yield from recontacting their patients by telephone versus letters.…”

Men's experiences of recontact about a potential increased risk of prostate cancer due to Lynch Syndrome: “Just another straw on the stack”

“…There has been much debate on the ethics and feasibility of recontact, and whose role it is to deliver additional information based on genomic data in clinical practice (Carrieri et al, 2017b(Carrieri et al, , 2016Johns et al, 2017;Letendre & Godard, 2004;Otten et al, 2015;Sirchia et al, 2018). Despite the lack of professional consensus, health care professionals continue to recontact patients in various settings (Dheensa et al, 2017;Forrest & Young, 2016;Johns et al, 2017;Otten et al, 2015;Sirchia et al, 2018). Recontacting patients with new genetic information will become more common.…”

Reply to Bombard and Mighton

“…Furthermore, as Bombard and Mighton also point out, a recent survey on recontacting practices [1] reported that recontacting is already occurring in Europe, but not systematically, with inequalities within and across countries. We think that the guiding principles in our recommendations represent an important step to start addressing these inequalities.…”

“…The overarching reason to not have recommended recontacting as a firm "duty" at this time is because we believe it would not be feasible for all contexts and could potentially cause more harm than benefit. Specifically, recommending a duty to recontact: (i) is unlikely to be useful or even possible in countries with legislations which do not allow this course of actions [1]; (ii) is likely to create significant practical and legal issues in countries in which recontacting may be legally feasible, but extremely challenging from a practical point of view, due to lack of resources.…”