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Remote genetic counselors uncover how Parkinson's patients prefer to receive genetic information

Jennifer Verbrugge

Jennifer Verbrugge

Genetic counselors empower patients and their families with information, guidance, and emotional support to help them understand their family history, evaluate genetic testing options, and make informed choices based on test results.

Genetic counselors are becoming increasingly prevalent healthcare providers, as science evolves to identify the genetic component of even more diseases and the presence of those changes within genes that cause or contribute to certain diseases. With the onset of the COVID-19 pandemic and the need to work virtually in order to slow the spread of coronavirus, the awareness and availability of licensed and remote genetic counselors have become even more valuable.

Take Jennifer Verbrugge. She is a certified and licensed remote genetic counselor with the Department of Medical and Molecular Genetics at Indiana University School of Medicine. Verbrugge and her colleagues were recently selected to conduct research as part of the nationwide PD GENEration study, based upon their expertise in providing genetic testing and counseling specific to Parkinson’s disease.

The PD GENEration study, is a first-of-its-kind study that offers genetic testing for medically relevant Parkinson's-related genes and genetic counseling at no cost for people with a confirmed diagnosis of Parkinson’s disease. Specifically, the study is looking into the changes within seven key genes which may cause Parkinson’s disease.

One of Verbrugge’s roles in PD GENEration was to study a subset of nearly 300 people with Parkinson’s disease to understand the patient’s overall satisfaction with, knowledge of and psychological impact of receiving their genetic testing results either remotely via a genetic counselor or in person via a doctor or genetic counselor.

What this study found is there was no difference in the patient’s overall satisfaction, knowledge and psychological impact of receiving test results in either setting. Interestingly, one question on the satisfaction survey did show that patients felt more like a partner in their care, when receiving results from a doctor. These study results are critically important as more and more people enroll in the PD Generation study and people with Parkinson’s are told about the presence of certain gene changes that may help them to participate in clinical trials and research related to those genes and further empower them on their path to receiving better care.

“We are also integrating the learnings from this study into our own experience. In order to make people with Parkinson’s feel more like a partner in care, we are now offering video calling as opposed to just phone calls. Phone calls are the communications vehicle used by the remote genetic counselors in this study,” said Verbrugge.

The PD GENEration study, is funded by the Parkinson’s Foundation to empower patients to understand their own genetic findings and participate in their own care. To learn more about this study, visit parkinson.org/PDGENEration.

The views expressed in this content represent the perspective and opinions of the author and may or may not represent the position of Indiana University School of Medicine.
Author

Christine Drury

Associate Director, Research Communications

Christine joined IU in February of 2018 as the Associate Director of Research Communications. In her role she is responsible for directing communications for the IU Precision Health Initiative, Indiana Clinical and Translational Sciences Institute, and r...