We at InformedDNA had a wonderful time in Atlanta at the Annual Conference for the National Society of Genetic Counselors (NSGC), which provided the opportunity to meet so many of our colleagues in the genetics field, and of course, share some of InformedDNA’s exciting accomplishments from the past year.
On Friday morning of the conference, I was thrilled to be able to represent InformedDNA on a plenary session expert panel, which was very well-attended and had the room buzzing with active audience discussion, both for and against pre-test genetic counseling requirements. This panel included representation of genetic counselors/specialists with a research view on the topic: a VP of development at genetic testing database and technology and a genetic counselor with strong research focus, Gillian Hooker, PhD, ScM, LCGC; a laboratory genetic counselor, Kaylene Ready, MS, CGC; a genetic counselor who works in a growing neurogenetics clinic, Julie Cohen, ScM, CGC; and me, someone who works on a daily basis with health plans who choose to ensure appropriate pre-test genetic counseling for their members.
Our panel began with a brief history of pre-test genetic counseling as a requirement for high risk genetic testing, presented by Heather Zierhut, PhD, MS, LGC. This began with the Huntington’s disease testing three-visit counseling and genetic testing model. This model expanded as testing became available in other areas in which both uncertainty and psychological harms were posed. Panelists agreed that the benefits of pre-test genetic counseling have consistently included an increase in patient understanding/knowledge, increased satisfaction, increased empowerment, and improved decision-making, with reductions in patient distress and unnecessary costs associated with undesired or inappropriate testing. However, arguments against pre-test genetic counseling requirements have arisen. These particularly are focused on the implications of patient access to genetics-based healthcare.
InformedDNA has a unique perspective, serving both as an employer and advocate for access to genetic counseling services, as well as a collaborator with our health plan partners who are invested in increasing access to appropriate genetic health care. We partnered with Cigna more than five years ago to create Cigna’s Genetic Testing and Counseling program, which was among the first to require pre-test genetic counseling prior to certain high volume, high abuse testing. Over the last five years, one of the greatest learning points has been that these genetic counseling programs more than pay for themselves while enhancing the patient experience and giving members more access to genetic services.
Through the act of pre-test genetic counseling and informed consent, we have found that approximately 15-20% of patients choose not to pursue genetic testing. This is either due to testing not being the right fit for the patient; better testing candidates existing within their families; or, just overall lack of desire for the information that the testing would supply, among other reasons. This truly empowers patients to play an active role in their genetic health – they pursue testing when it’s right for them instead of simply following criteria not necessarily designed to address their personal situations.
It’s been exciting to be involved in a program that was designed to enhance the member experience, yet also generated enough savings to more than cover any costs for pre-test genetic counseling. While controlling costs is one reason that health plans consider a pre-test genetic counseling requirement, increased patient and provider satisfaction with access to high-quality genetic expertise is ultimately what makes these programs successful.
While limited access to genetic counselors has been posed as a reason to reconsider pre-test genetic counseling requirements, data from these programs shows there is capacity to complete genetic counseling within days of an appointment request. Additionally, it is because of these pre-test genetic counseling requirements that the genetic counseling profession has been empowered to innovate new service delivery methods, which has expanded access over the past few years. Since 2013, we have seen new advancements in technology and investigations into effectiveness of educational resources to supplement the genetic counseling process. We have seen the growth of genetic counseling assistants as a professional role that helps to increase genetic counselors’ efficiency and allows genetic counselors to focus where they are most impactful. And, we have seen an increase in the acceptance and use of telephone, video and group genetic counseling.
As the largest U.S. provider of genetic counseling services by independent, board-certified genetics specialists, InformedDNA will provide more than 18,000 telephonic (telephone and video) genetic counseling sessions by the end of 2018. No longer is the party line that there are “too few” genetic counselors; it is more about how we, as a profession, can increase the awareness of the many ways in which patients can be helped by genetic counselors. Many health plans are taking notice of the benefits that genetics expertise brings to their members. (As proof of this, note that InformedDNA’s genetic counseling service is now in-network for nearly 100 million Americans.) Hopefully, this trend will grow even further, now that the Access to Genetic Counselors Services Act of 2018 (H.R. 7083) has finally reached the Hill this year!
In addition to the points above, my colleagues on the panel also posed questions of how we should consider the use of pre-test genetic counseling, and genetic counseling in general, as the availability of direct-to-consumer genetic testing and less expensive panels become more available. There was agreement that the field of genetic counseling will become more needed and will continue to adapt and evolve over time. There is high value in continually assessing the goals of the genetic counseling session, both pre- and post-genetic test, or really at any time in a patient’s life cycle.
To date, feedback we’ve received indicates that InformedDNA has successfully contributed to bringing awareness about the value of genetic counseling to the forefront of healthcare in the pre-test setting. We look forward to working strategically, with our genetic counseling colleagues and our health plan and health system partners and other stakeholders, to ensure that the many ways in which genetic counselors can benefit personalized healthcare all come to fruition.
To learn more about our genetic counseling services, our Genetics Services Program™ for health systems and hospitals, or our Genetic Benefits Management™ services for health plans, please give us a call at 800-975-4819; send an email to firstname.lastname@example.org; or, just fill out the form below and we’ll get in touch shortly.