DenaDNA is an online brand dedicated to explaining complex genetic concepts in a fun and visual way, led by genetic counselor and entrepreneur Dena Goldberg. In this interview, she portrays the roles and responsibilities of a genetic counselor and explains why every medical team should have one.
Please describe the story behind DenaDNA: What sparked the idea, and how has it evolved so far?
I’m a board-certified genetic counselor. I’ve worked in several laboratories, and then went back to school and earned my master’s degree and board certification. For the last four years, I worked as a cancer genetic counselor at the University of California, San Francisco.
I started my brand, Dena DNA, while I was in graduate school. I started by creating comic strips about genetic counseling which got a lot of attention on social media. I realized the potential benefits of branding myself and created a successful crowdfunding campaign to fund my thesis research. As the years went by and I created several successful social media campaigns, it grew organically within the genetic counseling community and the genetics community at large.
Through Dena DNA, I combine my creative skills with my scientific knowledge and training to teach about genetics in fun and unique ways. At the end of 2019, my husband got a job in Los Angeles, and since I had been wanting to try my hand at entrepreneurship, I left my clinical position to work on Dena DNA full time.
Right now, I focus on creating content because accurate genetic science is rarely portrayed in the media. I use media techniques that the medical community hasn’t used before to try and teach people about genetics from a clinical point of view. I’m teaching how to benefit from the science rooted in our healthcare system and how to obtain genetic services most people don’t know are available.
I’m also working with an Academy Award-winning producer and we are about to start fundraising to create a documentary TV pilot about genetics, which will hopefully become my own television show.
Here’s one of Dena’s recent videos, where she explains the concepts of Genetic Sequencing vs SNP testing:
What kind of things can people discover when they talk to a genetic counselor?
Genetic counselors are embedded throughout our healthcare system. All genetic counselors have to be board-certified and most of them end up specializing in areas such as prenatal/preconception, pediatrics, general genetics, oncology, neurology, cardiology, metabolic, psychiatry, and others.
An important part of figuring out which test is appropriate for an individual is performing a thorough evaluation that takes his or her personal and family history into account, and using this information to understand which genetic test is the most appropriate for him or her.
In addition to this evaluation, it is also vital to know why a person wants to have genetic testing and what he or she is looking for as there is no one test that looks for all genetic conditions at once.
Since there are many ways to look at our genetic information, the technology used and the genes targeted depend on the information we collect. When we know what the patient is concerned about or at risk for, we can determine that risk and create a medical plan to lower it or prevent disease altogether.
How can genetic counseling improve the decision making of doctors and healthcare providers?
Genetic counselors are part of the healthcare team. We work with patients and their doctors to figure out the best testing and treatment plan for them based on their genetics. For example, in cancer genetics, there are many reasons for people to come see us. The goal is to come up with a preventative screening plan so we can get ahead of cancer.
For instance, if someone has a higher risk of colon cancer, we would recommend more frequent colonoscopy screening and start at a younger age because this allows us to find polyps before they become cancerous. If a person already has cancer, the results from the genetic testing may change the cancer treatment plan and allow relatives to start screening earlier.
Due to certain inherited syndromes, patients with cancer often respond better to specific therapies. If the patient has a syndrome but is unaware of it, he or she will receive the standard treatment and may not respond as well. Genetic counseling helps the patient personalize the prevention and treatment plan that best suits them.
What is Genetic Discrimination, and how does it impact the patients?
Genetic discrimination is when someone’s genetic information is used against them. It can be either to deny services such as raising insurance rates or denying coverage, or making decisions such as hiring and firing or promotion decisions based on genetic information.
Often, people are hesitant to undergo genetic testing because they are scared of being discriminated against based on their results. The truth is that, at least in the US, there are laws that prohibit genetic discrimination and make it illegal. I’m not sure about other countries, but in the United States, there are protections that prohibit health insurance companies and employers from genetic discrimination. Part of my job is making sure people are aware of their rights.
Which trends and technologies do you find to be particularly intriguing these days?
I think tumor testing is really interesting. There’s a huge promise in cell-free DNA testing where you’re looking at DNA from the bloodstream to detect if someone has a tumor. It also allows us to look at fetal DNA in a pregnant woman’s bloodstream to be able to collect information about the fetus.
Pharmacogenetics is also really interesting. Looking at genetics to tell what medication may better suit a patient is an incredible ability and I think there’s a lot of promise there as well. We have a long way to go in that area, but it’s growing massively now and I believe it will be helpful for a lot of doctors who are trying to figure out the best treatment plans for their patients.
Psychiatric genetics is also really interesting and I think there’s a lot to learn from it. It’s a little more complicated than other types of disorders that we look at, but being able to help people with mental health issues using genetics is very exciting and holds great promise for the future.
How do you envision the standardization of genetic testing and counseling in healthcare systems?
First of all, genetics is the future of medicine because everything in our body is in some part determined by genetics.
Doctors don’t get as much genetics training in medical school as you would think, if any at all, especially if they were taught over five years ago before we had the technology that we have today.
There’s so much your doctor needs to remember aside from genetics. Moreover, genetics is a rapidly growing field that changes every day. This creates a need for someone who specializes in genetics to be part of any healthcare team, someone who is focused only on genetics and can help doctors and other healthcare providers understand genetic testing and incorporate results into a patient’s care plan.
The optimal future of genetic medicine is having a genetic counselor in every healthcare team. Genetic counseling isn’t the same thing as genetic testing as it also includes a counseling aspect. (Not everyone who has genetic counseling will choose to undergo genetic testing.)
When you work in genetic medicine, you are not just seeing the patient in front of you, you are also working with their family. For instance, if you find a gene change that could affect a patient’s relatives, the relatives at risk may want to see a genetic counselor as well. There is a lot of psychology involved in working with families and in understanding and navigating the relationships among family members. This is a unique set of skills that genetic counselors possess, and has shown to be incredibly beneficial for patients and families.
Genetic counselors also help prevent the wrong tests from being ordered. Several studies as well as reports from genetic testing laboratories and insurance companies show that physicians without specialized training in genetics who order genetic testing without a genetics provider often order genetic testing that may not be the most appropriate, comprehensive, or affordable for their patients. Since there are genetic counselors employed by these companies, they often suggest a different test more appropriate for the patient.
When no genetics professional is involved, patients may end up paying a lot more money than they needed to. Additionally, misinterpreted genetic test results have led to patients undergoing unnecessary surgeries or missed opportunities to save lives due to a non-genetics provider misreading a test. It is beneficial to both the patient and the healthcare system to involve a professional who knows how to navigate the cost of testing, choose the most appropriate testing, and know when to keep going or to stop testing, and how to read and interpret results. That’s what I hope for the future.
Genetics is a complex topic. How do you simplify it for the layperson who isn’t familiar with the terminology and science behind it?
Part of genetic counselor training is learning how to talk to people from all different backgrounds and education levels. I was trained to break things down for the layperson. I draw from my years of working with patients to create visual aids because I think they are extremely powerful. Most people learn better when they’re hearing and seeing at the same time, so I use my illustration, graphic design, and animation skills to make concepts visual while explaining them in ways that I know people with a short attention span or with no scientific background can understand.
I encourage anyone interested in the topic to watch my videos where I use creative ways to communicate this complicated information to the public. I’m on Instagram, YouTube, TickTock, and Facebook. Check out my website if you want to learn more.
