Understanding Genetic Screening for Millennials ft. Genetic Counselor Dena Goldberg
Written by Melissa Schenkman, MPH, MSJ
Dena Goldberg, MS, CGC, is a board-certified genetic counselor with extensive clinical and research experience. She previously served as the Gordon and Betty Moore endowed counselor of hereditary gastrointestinal cancer prevention at University of California, San Francisco, and is now the founder of Malibu Genetics, LLC, where she provides personalized genetic counseling for patients.
What led you to pursue a career in genetic counseling?
Dena: My journey started very personally when I was six years old. My youngest sister was born with a chromosome abnormality that wasn't detected with the technology available back then. My mom, who's a pediatrician, knew something was different, and my parents actually sat me down and explained chromosomes when I was really young. I've been fascinated ever since with what makes us tick, and originally wanted to work with families like mine who had a sibling or child with a disability. Eventually, I moved into adult and preventative care, where there's so much we can do to lower disease risk.
What does the genetic screening landscape look like for millennials today?
Dena: For our generation, there are really two main areas to consider. First is family planning - many of us are having babies or going through IVF, so there's genetic testing you can do before having a child. This includes carrier screening that everyone should have regardless of ancestry, plus various types of testing to look at fetal DNA and embryo health.
The second area is prevention and risk reduction - looking at our adult health to understand what we're more or less likely to develop. By combining family history, personal history, and genetic testing, we get a better picture of what our medical care plan should look like and whether we need earlier, more frequent screening than the general population.
How is this technology changing?
Dena: It's changing quite quickly. New tests come to market regularly, prices are generally going down, and more genes are added to testing panels every year. As we learn more over time, additional genes get added to panels, so someone might need to update their testing. If somebody had genetic testing more than five to ten years ago and it was negative, we really like to get them back in for more current testing.
It's important to understand that the genes we're looking at don't change - you have the same genetic code from birth to death. What changes is how deep we can dig and what our technology can detect.
What's the difference between genetic counseling and genetic screening?
Dena: Genetic counseling is the conversation you have before and after genetic testing. It involves establishing your goals, looking at personal and family history, figuring out the best test for you, and then interpreting results in context. We also help navigate emotions around testing and communicate information to family members.
Genetic screening/testing is literally the process of collecting blood, saliva, or cheek cells, sending it to a laboratory, extracting DNA, and analyzing specific genes. You can do one without the other, but I always recommend working with a genetic counselor to put everything together properly.
What does the actual testing process involve?
Dena: Most tests are simple blood or saliva samples. We're looking at the same white blood cells either way. I do 99% of my testing with at-home saliva or cheek swab kits because they're so convenient. The only thing to remember is not to eat, kiss, drink, chew gum, or smoke within 30 minutes of collecting the sample, as this can contaminate it.
You only need to test once for each specific panel, and results typically come back in two to three weeks for most standard panels.
With rising cancer rates in people under 50, how might this affect genetic screening recommendations?
Dena: Many early-onset cancer cases won't show anything detectable on genetic tests, suggesting it's likely a mixture of environmental exposures and multiple genes that individually don't confer high risk. For these cases, the best approach is earlier screening and more awareness about warning signs.
However, conditions like Lynch syndrome - the most common inherited form of colorectal cancer - are actually quite common, but only a small percentage of people who have it actually know they have it. The systems we have in place to identify and test everyone who fits criteria aren't fully working. As we move toward population-based testing where everyone is offered genetic screening instead of just those who fit specific guidelines, we'll likely identify more cases and provide better care.
How can genetic screening help millennials identify their individual risks?
Dena: It's a combination of understanding family history, personal history, and genetic testing results. Genetic screening looks at single gene conditions where a specific genetic change is associated with very high risk for specific conditions. We call these "clinically actionable" because we have clear actions people can take.
For example, someone at increased breast cancer risk might start earlier breast MRIs instead of waiting for mammograms at 40, or alternate screening every six months. People with Lynch syndrome can have earlier, more frequent colonoscopies and might benefit from aspirin therapy. Those with certain cardiovascular genetic changes might need implantable defibrillators or specific medications to prevent cardiac events.
How do you work with patients after they receive results?
Dena: We go over what the results mean in the context of their personal and family history - what they're at increased risk for and what the consensus guidelines recommend for their care. We provide the knowledge and answer questions, but everything is up to the patient. It's their choice what to do with the information, but our job is to give them what they need to make the best decision for them.
Is there an age cutoff where genetic screening becomes less helpful for older family members?
That's a great question that's very situation-dependent. I'd argue it's really never too late for testing, though for someone who's 99 or 100 years old, the testing probably isn't for their own care since they've lived out much of the risk period. But that information is still very important for relatives.
If we know a grandmother has a mutation, then all her children qualify for testing and we know they're at risk. If she tests negative, we know it's not from her side, which can change who really needs testing in the family. There's no magic age when testing is no longer necessary - it depends on someone's health, the specific gene, and the family history.
What are you most hopeful about for the future of genetic counseling and screening?
Dena: I love that millennials are a generation that's very proactive about health risk and tend to make decisions based on wanting to live healthier lifestyles. We're going to utilize genetic technology way more than our parents did, both because they didn't have the technology and because we have this motivation for proactive health management.
I'm particularly excited about increasing access to appropriate, expert-guided, evidence-based genetic testing. Population screening, where anyone can get tested regardless of family history, is really where the future is going, but it's important to have access to genetic counselors who can help people understand their results.
I'm also excited about the movement toward studying women's health more broadly - understanding genetic causes of conditions that affect women, from adverse pregnancy outcomes to early menopause, endometriosis, PCOS, and autoimmune diseases.
What are your top three things millennials should know about genetic counseling and screening?
Dena:
It's very accessible. There are genetic counselors at every major health institution, in private practice, and through telemedicine. You can find one near you at findageneticcounselor.com, and services like Genome Medical can connect you with a genetic counselor within days.
Genetics is one powerful tool in your proactive health toolkit. If you want to be proactive about your health, genetics can absolutely be part of that approach, but it should be done with an expert, not just ordered online.
Avoid random online genetic tests. Online genetic testing without a genetic counselor involved is not the same as medical-grade testing. These direct-to-consumer companies often lack proper regulation, don't follow the same privacy laws, and don't provide expert interpretation of results. Always work with a healthcare provider you trust, preferably a genetic counselor.
Want to hear more from Dena? Check out the YMyHealth podcast on YouTube and your favorite streaming service!