Genomic testing has evolved from a futuristic diagnostic, the administration and results of which were exclusive to healthcare professionals, to a direct-to-consumer (DTC) product available for purchase on the internet. A test which not so long ago felt ripped from the pages of science fiction pulp, can be shopped for, ordered, and used by patients- without intervention. Patients, now empowered consumers, possess the ability to unlock their own genetic destiny for scrutiny; providers and customers alike can rely on the revelations of genetic testing to inform lifestyle choices, preventive medicine, and intellectually and psychologically prepare for a potential future diagnosis.
Accessing their genetic blueprint is only the start of the patient journey- once armed with their genomic data, they may need assistance interpreting results, determining next steps, and continued support managing care. This presents an opportunity for genomic diagnostic companies to offer more holistic solutions for their customers. Engagement doesn’t end with clinical diagnostics; it begins there.
The advent of DTC assessments
Since the Supreme Court ruled in favor of the patent suit brought against Myriad Genetics in 2013- rejecting the assertion that human gene sequences can be patented- genomic testing companies have proliferated. Patients have the option to purchase DTC assessments which can clarify their individual story spanning before their birth to foretelling of possible terminal outcomes. While some tests unearth ancestral stories, others predict the genetic makeup of children yet to be conceived. Still others can identify biomarkers which suggest the plausibility of outcomes prior to actual diagnosis.
Gone are the days people had to visit their doctors to order and receive a test, waiting by the phone or their mailbox for the results. We are in a new era of patient empowerment. As consumers, patients have the agency to choose their diagnostic provider, and then make healthier choices based on testing evidence.
Genomic testing lessens invasive, expensive tests by health care providers, such as biopsies, while bettering patient outcomes. But patients have voiced their struggles with genomic testing companies, namely around the need for transparency and support regarding their results.
Distinction by holistic solutions
In 2017, the Food and Drug Administration changed its stance on DTC testing, allowing 23andMe (after suspending their genetic tests in 2013) to market their “Personal Genome Service Genetic Health Risk” tests. Additionally, they issued new exemptions which will permit other companies to market comparable tests with the same restrictions, thereby swinging open the doors for other genomic diagnostic companies to offer and market DTC multipanel tests.
“Consumers can now have direct access to certain genetic risk information,” said Jeffrey Shuren, M.D., director of the FDA’s Center for Devices and Radiological Health. “But it is important that people understand that genetic risk is just one piece of the bigger puzzle, it does not mean they will or won’t ultimately develop a disease.”
Herein lies the opportunity for companies to differentiate themselves among prospective consumers- by contextualizing the whole of the “puzzle” and improving the patient experience with continued support. As patients browse test providers, compare costs (many of which are now covered by insurance), and vet customer testimonies, an integral part of their decision-making when choosing between similar products may hinge on the promise of patient support.
Improving the patient experience
Before completing a genomic test, many patients opt for genetic counseling before choosing to continue with their diagnostic. Genetic counseling helps patients better prepare themselves for potential findings–and help them decide if they truly want to know what lurks in their genetic code–particularly around the risk of Alzheimer’s, and Parkinson’s disease. Beginning the patient journey with assurances positions them for success and provides them with comfort as they navigate their genomic course.
Take for example Prenetics, a genomic testing company that analyzes genetic variations that can affect nutritional needs. After providing their clients with a detailed summary of their results, Prenetics offer on-going follow-up and provide nutrition counseling by health coaches.
Integrating a customized patient connection platform centralizes support–both internally and customer-facing. Pre and post testing counselors, coaches, nutritionists, and members of the patient’s provider care team can continue working with patients by translating and contextualizing their results, offering resources, and helping them make data-driven decisions. This can result in prolonged patient engagement if their support network aids them in preventing a condition for which they are predisposed.
When a patient comes face to face with a potentially life-altering biomarker, they will need an accessible advocate to help them make sense of the discovery, and continue on their genomic diagnostic journey. Here, companies can offer value beyond their test, a service which during a possibly defining and vulnerable time, cannot be quantified.