Welcome to Genetic Support Foundation’s new website. We are thrilled that you found us and are honored to have you here learning more. We are a newly formed, independent and charitable nonprofit organization. Our mission is to provide up-to-date, objective genetic information to patients, providers and healthcare organizations, supporting those in need of genetic services and facilitating the adoption of best genetic practices. This is a big and bold idea, but we believe in this mission and its importance as genetics increasingly becomes a part of mainstream medical practice.
At this point, you may be thinking to yourself, there are a plenty of resources and organizations out there regarding genetics and genetic education, why one more? What does Genetic Support Foundation have to offer beyond what is already available? And really, what can an independent nonprofit do that isn’t already being done?
Great questions; we are glad you asked. When Jon Wolff M.D., founder of Genetic Support Foundation, approached me over a year ago with a dream of starting a nonprofit devoted substantially to genetics education, I had to take some time to think about a critical question….”Is there a real need?” Every day, I become more and more convinced that yes, there is a need for an organization like Genetic Support Foundation- an independent nonprofit whose main agenda is to provide objective and up-to-date information on genetic technology and genetic testing for patients, providers and healthcare organizations.
Why do I think there is a legitimate need? I’ll give you a practical example. One of the first things I did when I was thinking about accepting the position as executive director of Genetic Support Foundation was to look online at what information was available for patients regarding one of the newest prenatal screening tests, noninvasive prenatal testing, NIPT (or NIPS, cell free DNA testing, whatever you choose to call it). A quick Google search was quite telling. At that time, about half of the items that popped up on the first page of the Google search were from industry, the Commercial Laboratories offering NIPT (according to Search Engine Journal, 75% of people don’t move past the first page search results). Indeed, the patient educational information from the Commercial NIPT Laboratories was beautiful, clean, easy-to-navigate and seemed to be up-to-date and accurate. However, these resources may reflect industry bias. Within the information from other sources, it was hard to find answers to some of the complicated aspects of this test. It was then that I knew there was a gap to fill.
Let’s take a look beyond NIPT. With next generation sequencing upon us, direct-to-consumer testing now available, and whole genome sequencing costs coming down rapidly, genetics is increasingly becoming a part of mainstream medicine. Next generation sequencing holds great promise when it comes to the possibility of diagnosing diseases and developing treatment strategies. But… the technology does bring potential caveats such as incidental findings and variants of unknown significance that can cause worry and anxiety rather than provide clarity to individuals or families who are searching for answers.
There is no doubt that these medical breakthroughs are changing the way we are diagnosing and eventually will be treating diseases in all areas of medicine. We are excited about the future of medicine and how genetics will play a leading role going forward. However, we believe it is important for patients and providers to understand both the promise and the limitations of these new technologies. This information will empower patients to make informed choices and allow providers a balanced and accurate understanding of what the technology can offer.
The question is not about IF newer genetic tests are a great advancement in science and technology but rather, WHO should providers and patients look to for education regarding advances in genetic testing and genetic technology? Commercial Laboratories are currently leading the way on educating providers and in turn, patients, about newer genetic testing and technology. This makes sense; they have developed the tests and they know them inside and out. The point where things get tricky is when we start considering the possible conflict of interest given the fact that they are selling and making a profit off of the tests that they are educating patients and providers about. If such education is primarily provided by those who stand to profit from the product, it is feasible that the product limitations may be understated, resulting in misinformed providers and patients.
This is a question for consideration; this is not an indictment of Commercial Laboratories, they are providing valuable technology and marketing it as one would expect. Perhaps there needs to be more voices at the table, informing patients and providers from a diverse set of motivating factors?
Genetic Support Foundation believes that we are at an important juncture where the need for objective voices in educating providers, patients and healthcare organizations in the realm of genetic testing and genetic technology is critical. Our mission at Genetic Support Foundation is to do just that.
If the mission of Genetic Support Foundation and what you have read resonates with you, will you join our cause? You can get involved with Genetic Support Foundation in the following ways:
Thank you for your checking us out! The Genetic Support Foundation Team looks forward to providing you with the information you need to move confidently into the future of genetics and genetic testing, so you can make informed decisions about genetics as it relates to you and your health or the health of your patients or members.
Heidi Lindh, MS, CGC
Genetic Support Foundation
The two strands of DNA contain essential information for our growth and development. Likewise, we intend for our blog to provide information relevant to growth and development in the field of genetics. Thus the name of our blog, “Our 2 Strands”. You will find our blog to be up-to-date and pertinent for both patients and providers.