J Genet Couns. 2019;1–5. wileyonlinelibrary.com/journal/jgc4
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1 © 2019 National Society of Genetic Counselors
DOI: 10.1002/jgc4.1099
BRIEF REPORT
Lexigene®: An online medical genetics translation tool to
facilitate communication
Mireille Cloutier
1
* | Julie Hathaway
2
* | Rachel Vanneste
3
* | Priscila D. Hodges
4
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Guillaume Sillon
5
*
1
Regional Genetics Program, Children’s Hospital of Eastern Ontario, Ottawa, Canada
2
Blueprint Genetics, San Francisco, California
3
Division of Medical Genetics, Department of Pediatrics, Saskatchewan Health Authority, Saskatoon, Canada
4
The University of Texas Health Science Center at Houston, Texas
5
Division of Medical Genetics, Department of Medicine, McGill University Health Centre, Montreal, Canada
Correspondence
Mireille Cloutier, Regional Genetics Program, Children’s Hospital of Eastern Ontario, Ottawa, Canada.
Email: lexigene.cagc-accg@gmail.com
KEYWORDS: translation, communication, genetics service delivery, cultural diversity, genetic counseling, language, bilingualism, language
training, multicultural competence, medical interpretation, medical genetics, CAGC, NSGC
Lexigene® (www.lexigene.com) is an online lexicon which provides
the translation of terms related to medical genetics, and more specif-
ically, to the profession of genetic counseling. This report describes
how a team of genetic counselors (GCs) created Lexigene® to im-
prove the communication of genetic information to patients in lan-
guages other than English.
It has been described that when individuals do not have access to
health care in their preferred language, there is a potential for neg-
ative health outcomes (Bowen, 2000). These patients are less likely
to understand or adhere to care plans and are less satisfied with
the care they receive (Gregg & Saha, 2007; Jacobs, Chen, Karliner,
Agger-Gupta, & Mutha, 2006). Similar findings have been shown
for patients receiving genetic counseling for a variety of indications
when counseling is not provided in their preferred language (Cruz-
Correa et al., 2017; Rajpal, Muñoz, Peshkin, & Graves, 2017).
The need to diversify the field of practicing GCs has been noted
throughout the history of the genetic counseling profession. Early
on, three papers published in the second volume of the Journal of
Genetic Counseling (JOGC) outlined the need to diversify the field as
well as the shortage of bicultural and bilingual GCs (Punales-Morejon
& Rapp, 1993; Smith, Warren, & Misra, 1993; Weil & Mittman, 1993).
Later, additional publications also described the importance of diver-
sifying the population of GCs (Lega, Veach, Ward, & LeRoy, 2005;
Schoonveld, Veach, & LeRoy, 2007), and in 2011, an entire issue of
the JOGC was dedicated to GCs’ cultural competency. More recently,
Ormond et al. (2018) described the availability of genetic counseling
globally and highlighted the challenge of this service being offered
in different languages. Despite these efforts, data from the 2018
National Society of Genetic Counselors (NSGC) Professional Status
Survey showed that only 14% of respondents (364/2,543) pro-
vide genetic counseling in a language other than English, including
Spanish (169/364) and French (44/364) (NSGC, 2018). Since there
is a dearth of bilingual GCs in North America, the use of medical
interpreters is common in order to provide health care to Limited
English Proficiency (LEP) individuals and to bridge “patient-provider
linguistic and cultural differences” (Dysart-Gale, 2007).
Genetic counseling-specific resources for GCs providing services
to patients in a second language and for medical interpreters have
historically been limited. For example, only a few printed French-
English medical genetics glossaries exist; however, none are specific
to the field of genetic counseling. As such, they lack many of the
terms relevant to the profession and do not encompass the breadth
of a GC's scope of practice.
Given these known barriers to care and based on an exploratory
study (Vanneste, Fitzpatrick, & Russell, 2008) as well as anecdotal
evidence, four bilingual Canadian GCs (MC, JH, GS, and RV) recog-
nized the need for a language tool that translates English and French
terms related to genetic counseling. In 2008 they wrote a proposal
for an online language tool “Lexigene®” with the following three
goals: (1) to enhance the training of GCs, whether they train in a
primarily French or English program, by giving more students and
new graduates an opportunity to counsel in French or English as
*These authors contributed equally to this work.