notifications-return-of-results

My Gene Counsel Positioned to Foster Responsible Return of Results, Per Recent ASHG and ACMG Guidelines

The ASHG position statement published on April 4, 2019 in The American Journal of Human Genetics outlines a minimum set of principles researchers should follow when recontacting research participants to update them about reinterpretations of genetic variants. In a separate statement issued April 24, the ACMG published Points to consider in the reevaluation and reanalysis of genomic test results to guide laboratories in developing policies and protocols for variant reevaluation, case-level reanalysis, and the reporting and communication of any reclassifications that may affect clinical management.

While both statements recognize that recontacting individuals is a desirable goal, they also acknowledge the limited resources and costs associated with achieving this initiative and believe technological advances will help address these challenges.

“As the volume of identified and re-interpreted variants continues to increase, IT solutions will be critical to handling these immensely large numbers at scale, at much lower cost, and more rapidly than doing so manually,” said Howard Levy, MD, PhD and one of the lead authors on the ASHG statement. “IT solutions can also reduce the risk of biased or uneven approaches to attempting to recontact.”

Currently, recontact occurs ad hoc, if at all. My Gene Counsel’s solution provides an automated, algorithmic approach to ensure that results are returned accurately and consistently through a HIPAA-compliant portal. It also allows participants to set, edit, or turn off notifications for those who choose to decline further updates at the time of recontact.

“After spending many years in clinical care, My Gene Counsel was created specifically to meet the need for quality genetic counseling at scale,” said Ellen Matloff, president and CEO of My Gene Counsel. “Our solution is built to monitor genetic research and medical guidelines for clinically-relevant updates and automatically deliver personalized notifications to participants and health care providers accordingly. We have relieved research organizations and laboratories of the burden of checking for updates and recontacting patients by automating the process to ensure an efficient and effective way to keep patients up-to-date on their genetic results.”

The updating nature of the My Gene Counsel platform, which has been operational since August 2018, was built to address the issue of recontacting patients and study participants with relevant medical updates specific to their personal test results and has been cited as one of the most important features by current users.

“I was diagnosed with breast cancer at age 40 and found to carry a variant of uncertain significance in BRCA1. The VUS left me and my family in a terrible position. Should I have my ovaries removed? What would this mean for my daughter,” said Sarah C., a genetic testing consumer. “We later learned that the VUS had been reclassified as a benign finding. Receiving this update from My Gene Counsel was critical to my management and that of my family members.”

About My Gene Counsel:
My Gene Counsel is a HIPAA-compliant digital resource for genetic information and a one-stop-shop to stay on top of advancements tied to personal genetic test results. The company was founded in 2014 by certified genetic counselors with more than 30 years of clinical experience and leadership in genetic counseling and testing. From deep in the trenches of clinical care, they saw the need to provide consumers and clinicians with a progressive, digital method of ensuring accuracy and staying up-to-date on their genetic test results. For more information, visit http://www.mygenecounsel.com.