DNA tests can tell you amazing things, but results can be confusing or even reveal scary health information. We chat to DNA ALLY co-founder Nargol Faravashi on how they can help you make sense of your DNA.
What was the inspiration behind founding DNA ALLY?
In the past few years we have noticed an increase in number of friends/family members who have taken direct-to-consumer (also known as DTC) tests, most of them didn’t know what their results meant, didn’t understand the impact of positive results on their family members and didn’t have clarity on the next steps. Seeing this unmet need inspired us to start DNA ALLY. By providing a high touch, compassionate solution, we help the anxious and overwhelmed with expert insights and access to genetic counseling services. With DNA ALLY we bring human touch and expertise into the journey of genetics to help patients understand the next steps.
Could you explain a bit more on the importance of genetic counseling for people who are taking genetic tests?
In general, genetic counselors help to identify people and families at possible risk of a genetic disorder, gather and analyze family history and inheritance patterns, calculate risks of occurrence and recurrence, and provide information about genetic testing and related procedures. A genetic counselor helps people / families think about why they want the test [what type of information are they looking for] and the implications of getting that genetic test – whether for ancestry and/or health information. A genetic test is not just about the individual but about a person’s personal ecosystem, what to do with unexpected ancestry results and impact on family relationships, what to do with positive and negative health information results – and an understanding of what is actually being tested and what it means to have a “positive” or a “negative” result – what type of follow-up testing and/or health evaluations may be needed – what is the impact to extended family members, so forth and so on.
What are some of the concern or risks with direct-to-consumer genetic tests and the results that are provided to consumers?
One aspect of direct-to-consumer genetic testing worth explaining to consumers is the comprehensiveness of these direct to consumer tests. The example most people bring up is 23andMe testing for only the 3 most common variants of the BRCA1 and 2 genes, when there are 1,000s. This could lead to false negative results.
To provide a bit more background, BRCA1 and 2 are two genes that are associated with an increased risk for breast cancer and other types of cancer. In the case of genetic variants in BRCA 1 and 2, it can lead to an increased lifetime risk for specific types of cancer. The 3 most common variants tested in the BRCA 1 and 2 genes are actually found in individuals of Ashkenazi (Eastern European) Jewish decent – for an individual who is not Ashkenazi Jewish but who has a significant personal and/or family history suspicious for a variant in either BRCA 1 or 2, testing negative for these 3 variants would not be helpful for them……they could still have a significant variant elsewhere in either of these genes that could lead to an increased risk – it gives someone and their family members a false sense of reassurance. It is a concern that consumers may not be aware that some of these tests are not comprehensive and only look at limited variants.
Could you tell us a bit more about how your service works and what the process is for the consumer?
We are an Uber model of genetic counseling services, we provide access to nationwide network of genetic counselors who are available 7 days a week. Consumer can download the app or go to the browser, answer some preliminary questions and in less than 3 minutes they can connect with a genetic counselor who can help with pre and post- test consultations. We are helping consumers to understand their health risks, choose which genetic test to take, interpret results and determine the next steps.
What happens after a consultation with DNA ALLY in terms of support or if more information is required, are there follow up sessions available or resources provided to consumers?
We provide a comprehensive report outlining additional information about a disease, and next steps, we also provide additional link to other resources that could be useful for the patients. Patients can easily print out the report and share it with their physicians who can follow up on next steps and order additional clinical testing if it’s required based on the assessment report. If the consumer has additional questions, they can schedule a follow up session with the same genetic counselor or choose a different one.
What advice or considerations do you have for consumers who are looking at taking a direct-to-consumer genetic test?
It is important to ask yourself why are you getting tested and what do you hope to find out and the associated implications. You need to understand what is being tested in relationship to your situation and the limitations of the test. Talking to a genetic counselor in a pre-test consult session is helpful to determine which test is the right test so that you can order the right test in the first place and in many instances it may end up being a more comprehensive diagnostic testing versus a DTC test with limited variants. Understanding the limitations of the DTC testing really would guide patients to figure out what is the right test and consulting a genetic counsellor is a good choice to begin with.