Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Abstract

In-person genetic counselling (GC) is the model typically used to provide patients with information regarding their genetic testing options. Current and emerging demand for genetic testing may overburden the health care system and exceed the available numbers of genetic counsellors. Furthermore, GC is not always available at times and places convenient for patients. There is little evidence that the in-person model alone is always optimal and alternatives to in-person GC have been studied in genetics and other areas of health care. This review summarizes the published evidence between 1994 and March 2014 for interactive e-learning and decisional support e-tools that could be used in pre-test GC. A total of 21 papers from 15 heterogeneous studies of interactive e-learning tools, with or without decision aids, were reviewed. Study populations, designs, and outcomes varied widely but most used an e-tool as an adjunct to conventional GC. Knowledge acquisition and decisional comfort were achieved and the e-tools were generally well-accepted by users. In a time when health care budgets are constrained and availability of GC is limited, research is needed to determine the specific circumstances in which e-tools might replace or supplement some of the functions of genetic counsellors.

Outcomes of a Randomized Controlled Trial of Genomic Counseling for Patients Receiving Personalized and Actionable Complex Disease Reports

“…As all study participants received pre-test education during the informed consent session, and had access to online educational resources, genomic counseling may also have served to reinforce the test report message, and increase confidence in use of multi-page, detailed results. These findings are consistent with previous work showing that incorporation of evidence-based communication strategies in the result delivery process result in more accurate interpretation (Birch, 2015; Haga et al, 2014). …”

“…Mendelian disease risk) and service delivery approaches (Haga et al, 2014; Lewis et al, 2015; Ormond, 2013; Shiloh et al, 2015; Trepanier & Allain, 2014). These include phone (telemedicine) as well as use of e-learning approaches (both static and interactive) either alone or to supplement counseling (Birch, 2015; Haga et al, 2014). Use of adjunct e-learning approaches and automated family history risk assessment tools may be an avenue to impact patient knowledge and improve patient-centered health outcomes while increasing the efficiency of genomic counseling interventions.…”

“Not Tied Up Neatly with a Bow”: Professionals’ Challenging Cases in Informed Consent for Genomic Sequencing

“…Informed consent sessions will need to be carefully tailored to meet the personal needs of each patient or research participant through an open exchange with the patient aimed at identifying individual misperceptions, preferences and concerns (Hooker et al 2014). To supplement face to face counseling, innovative approaches to provide education and support decision-making are being developed and evaluated (Bradbury et al 2014;Hurle et al 2013), including e-leaning approaches (Birch 2014 Beskow et al (2014) has shown recently how through the use of a Delphi process, the views of multiple stakeholders can used to develop consensus on critical elements of informed consent.…”

“It gives them more options”: preferences for preconception genetic carrier screening for fragile X syndrome in primary healthcare

“…Recently, the American College of Medical Genetics (ACMG) acknowledged a more generic consent process may be needed in the context of expanded carrier screening (Grody et al 2013). To allay concerns that this may not provide sufficient information for all individuals, multiple methods of information delivery (i.e., information brochures, decision aids, smart phone applications, websites, and the opportunity to speak to a genetic counselor by telephone) could be used so that additional information and support is available to those who require it (Birch 2015;McWalter et al 2015). Research has shown that as more conditions are added to screening programs, condition-specific knowledge decreases (Ioannou et al 2014).…”