2017 Global Updates Article

Genetic Counselors Play Integral Role at ISPD's International Conference

The 2017 ISPD conference in San Diego, California hosted 586 people from all over the world. Of those, 133 attendees were genetic counselors (GCs) who represented 14 countries: Australia, Russia, Tunisia, Korea, Albania, China, Kazakhstan, the Netherlands, the United States, Canada, Singapore, Japan, Thailand, and the United Kingdom. Genetic counselors were active participants in all aspects of the conference including moderating and teaching the preconference courses, offering oral presentations, presenting posters, moderating sessions, and participating in lively discussions. Conference organizers and ISPD’s Board of Directors appreciate the integral role that counselors played in this year’s conference and the unique perspective that they contribute to the conference. 

One recurring theme that emerged during the preconference courses, debates, oral presentations, and the genetic counseling SIG meeting was that counseling plays a distinct role in prenatal services. As the complexity of prenatal testing options increases, it becomes more difficult to adequately support patients through the process of informed consent. Many attendees expressed concern that the development of prenatal tests has outpaced our ability to counsel patients appropriately regarding their options (see http://www.nejm.org/doi/full/10.1056/NEJMp1703425?af=R&rss=currentIssue&#t=article). 

Ideally, every patient should have access to a clinician who is well versed in the benefits and limitations of the prenatal screening and diagnostic tests. Counseling should help the patient take into account their own personal values when considering their options. There are efforts focusing on educating clinicians to help patients who are making decisions regarding prenatal testing. In addition, decision making aids such as educational videos that help support patients through the decision making processcan play an integral role in the future in helping us meet the challenge of responsibly educating pregnant patients regarding their options. There is evidence that high-quality decision making aids help patients reduce decisional conflict related to feeling uninformed (see Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, Trevena L. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2017, Issue 4. Art. No.: CD001431. DOI: 10.1002/14651858.CD001431.pub5). 

Groups such as the Genetic Support Foundation (GSF) and the Perinatal Quality Foundation (PQF) focus on improving the quality of communication regarding prenatal testing options. The GSF is an organization committed to providing objective, up-to-date information about genetics. They also offer evidence-based decision making aids for people considering prenatal screening and diagnostic tests. They have developed many educational videos to help patients considering screening and diagnostic tests. These videos were developed with collaboration and input from stakeholders, including women of reproductive age, parents of children with genetic conditions, genetic counselors, maternal fetal medicine specialists, obstetricians, pediatricians, and leaders from patient advocacy organizations. These aids are available on their website, geneticsupportfoundation.org. If you are interested in having a video translated into another language contact Katie Stoll at kstoll@geneticsupport.org. The Perinatal Quality Foundation educates obstetricians to help facilitate quality perinatal patient care. Recently, they have developed genetic education modules (GEM) for patients considering prenatal testing to help empower patients to make informed decisions. These modules are available to patients whose obstetricians subscribe to a service through the Perinatal Quality Foundation. More information is available at perinatalquality.org. Although developing decision making aids is currently beyond the scope of ISPD, we are hoping to identify high-quality decision making aids and make them available through our society.

ISPD’s Genetic Counseling SIG is dedicated to improving communication. One of our goals is to have representation from each genetic counseling society throughout the world. The mission is to increase international communication throughout the world regarding genetic resources for prenatal patients and their families.  We have begun to organize an international network of genetic counselors. As co-chairs of the SIG, Charlotta Ingvoldstad, a genetic counselor from Sweden and I will attend the World Congress on Genetic Counselling 4-6 October 2017 at the Wellcome Genome Campus in Hinxton, Cambridge, UK. We are excited to attend this conference as the major focus will be on the communication of genetic information in medicine, and we will discuss strategy to formally organize genetic counselors through ISPD with the purpose of improving international communication regarding prenatal screening and diagnostic testing.

If you have an interest in actively participating in our SIG, or have thoughts about topics you would like presented at future conferences, please contact Judy Jackson at Judith_Jackson@sshosp.org (United States) or Charlotta Ingvoldstad at charlotta.ingvoldstad@karolinska.se (Sweden).