Clinicians like myself face challenges in interpreting and communicating complex genetic information, especially when results are preliminary or lack clear clinical significance
We are in the process of returning results of an earlier genetic research and I am swarmed with so many questions from patients and even our designated genetic counselor is overwhelmed.
We realized the public and even our patients have limited understanding of genetic concepts, making it difficult to comprehend the implications of their results.
Patients fear they may face stigma or social implications due to any “genetic’ tag of their condition, affecting their willingness to receive or share results.
We have very few trained genetic counselors available, making it challenging to provide adequate support
My patients are experiencing anxiety or uncertainty about their results, it’s been over 3 years since samples were taken.
We have limited resources which I envisage affect the ability to provide comprehensive support and follow-up care.
How do you think we tackle this?
Do we make discussion about genetic testing and research part of their routine education during check up ?
We have not started with any dissemination of information yet but quick surveillance enquiries are bringing up these issues.
Should we shelve dissemination till we feel the collective group is ready ?some individuals feel they understand and need their results?
No tentative legal framework has been established for genetic information in Ghana. I believe it’s evolving.
This is such a tough one… I agree that genetic counselors are absolutely a blessing for the situations you described Vida, but not every setting has genetic counselors and at times they are indeed stretched too thin to offer guidance. I personally always emphasized that research takes time, not everything from research is applicable to the clinic and we don’t know what we don’t know. We started off with no genetic factors for PD and look where we are after the development of better genetic assessments. It’s still a growing field and we continue discovering more and more. Our tools get better, our studies get better, and we get more information from more and more people. Research we do is really like a step to get to the top of the mystery mountain for the diagnosis & treatment. We’re not sure if we still have a long way to go, or if we’re almost there. But we know that we just gotta keep putting those steps in to get closer.
I personally believe results should be shared because as a participant in a research study, you want to see that your time and efforts didn’t go to waste. They resulted in something. Also, sometimes it helps people to know that there are others out there hustling to help them out. What you do in Ghana is gonna impact the people in the US too, and they should know that to be reminded they’re not alone. Really explaining the implications well, emphasizing this is not the endgame but just a step along the way and you helped build that step. We still have so many unknowns but we gotta start somewhere. Based on the tools we have, these are your genetic results, but we keep getting better tools thanks to this research you contributed to, so what I’m able to tell you in 5 years may look different than today. I think they should know what the findings may mean as they participate in a study, they should have a clear set of expectations as they participate in research. Also, if they’d rather not know and that’s allowed in your study, then let them make that decision. Some things can be of concern for insurance purposes too, so that may actually require you to position accordingly and not put them at any risk.
Perhaps something locally could be to sit down with the genetic counselors and create an info sheet that the participants can be given, or the doctors/providers could use to communicate with the participants. So you can have the information from genetic counselors on how they describe the procedures and outcomes to the people, and follow that.