Genetics Interview #14: Lisa Lee of DNA Direct Talk

A couple of weeks ago, I had the chance to meet Lisa Lee, Director of Content at DNA Direct, which offers at-home clinical DNA testing for conditions such as hereditary breast and ovarian cancer. An experienced health communicator, Lisa’s background shows that commercial companies aren’t just out to make a buck. Many (and I hope all) have knowledgeable people working to improve the quality of and access to healthcare.

1. What does it mean to be the director of content at DNA Direct? What kinds of projects are you involved in?

As director of content, I manage the development of the information in our websites (www.dnadirect.com, www.genesanddrugs.com), as well as the in-depth Personalized Reports that accompany test results for our testers. I work closely with our clinical director and subject matter experts — genetic counselors, MDs, pharmacologists and other specialists — to ensure that we develop useful, accurate, and up-to-date information.

To provide personalized information for testers, we build a fairly elaborate editorial and technological schema for each testing area. The clinical schema is based on medical guidelines, personal diagnosis, family history, lifestyle risk factors and other factors that influence “what your genes mean.” We gather this information in questionnaires, then use the questionnaires — in conjunction with a person’s test results — to create a Personalized Report. [ Here’s a link to a sample Personalized Report: Sample Report ]

In general, my role is about education and accessibility. I sit between the patient/consumer and the specialist, translating the information from one to address the needs of the other and vice versa.

Something I love about my work is that on a daily basis, I get to read, write and talk about genetics from multiple perspectives: clinical research, consumer perspective, business application. I get exposed to the cutting edge, as well as the practical application. Because hiqh-quality content is at the core of what we do – “your genes in context” — I work to some extent with everyone in the company, from IT to the CEO, which is very refreshing. And although it’s not in the official job description, I also blog.

2. You once considered getting a graduate degree in genetic counseling, what persuaded you take another route?

I’m not sure it was persuasion as much as fate. I was just finishing up the prerequisites for most master’s programs in genetic counseling when the sole program in my area (UC Berkeley) was cancelled. My husband was deep into development of his chocolate business, Bittersweet, and I just couldn’t ask him to relocate. The tech bubble had burst and there were few jobs or consulting gigs to be had. I was contemplating whether to commute to a distant GC program or pursue another career, when my mother became gravely ill. My focus became getting her diagnosed and treated, and when treatments weren’t working, easing through what we thought were her final months. Amazingly, she pulled through — and is now surfing the Internet, as you know But that was a tough time.

So…24 hours after I returned home to stay, I sat down with my computer and rolodex and said, “Now I have got to get a job.” The next morning, Ryan (DNA Direct’s founder/CEO) called out of the blue. She said, “I’ve got a new company and I think I need someone like you. Do you know anyone who’s available?” Then she told me about DNA Direct. I coudn’t believe it! It combined what I knew how to do best — high-quality, interactive medical info, with what I really wanted to do — genetics, counseling. Having worked with Ryan many years before, I knew her passion and high standards would ensure the business was coming from the right place. Moments like that make you believe in a beneficent universe.

3. You have an extensive background in health including being a certified doula. From your experience as a doula, how well do you think women and their partners understand prenatal genetic testing?

Do you think the general public understands the difference between genetic testing for prenatal diagnosis vs. improving medical treatment?

Prenatal genetic testing is well understood among people with access to health care and/or education. (Access is always a caveat in the U.S.) In my experience, women are very proactive about learning about pregnancy and related health issues. For many, pregnancy is the first time they’re really interested in their anatomy, personal health, biological processes, and so forth.

I find it surprising, however, that most people aren’t familiar with carrier screening, particularly CF carrier screening. The exceptions are Ashkenazi Jewish or have a rare genetic condition in the family. This lack of awareness exists despite high carrier rates for cystic fibrosis (1/25 in Caucasians), guidelines from ACOG and others that everyone pregnant/considering pregnancy should consider CF screening, and significant educational campaigns by CF advocates. When I was considering pregnancy, for example, my OB never brought up any carrier screening — I had to ask. Too many couples I’ve known say the same thing; but the difference is that they didn’t know to ask and so they weren’t able to consider whether or not to have screening. Completing carrier screening prior to conception provides a greater number of options to couples who test positive (versus testing a pregnancy and receiving positive results).

Which brings us to your point about prenatal diagnosis vs. improving medical treatment. While prenatal diagnosis is generally understood, I don’t think testing for genetic risk is within everyone’s vocabulary — yet. For people with significant family histories, however, risk is something you grow up knowing intimately. If genetic counseling and testing is available, it becomes a tool in helping people better calculate their risk and make choices.

Having said that, I’ll contradict myself and add that whenever there is publicity about DNA Direct, we get many calls from people who want “the genetic test” that will read their DNA and tell them everything they are at risk for. People either want one magical test, or they don’t know testing exists. Understanding what tests are available and how they can be used is still working it’s way into common knowledge.

4. Because genetic testing is still relatively new especially in the direct-to-consumer arena, what are some of the main concerns expressed by potential customers of DNA Direct?

The most common concerns are similar to those that genetic counselors receive in more traditional settings: How accurate are the tests? What can the tests tell me? Does having a negative genetic test mean that my children will be “normal”? What will happen to my DNA after testing? Who will see my results? Will there be someone there who can answer my questions after testing? Is there a treatment/cure if I am positive?

(Some answers in brief: Our tests are scientifically validated and all but PreGen-Plus for colorectal cancer screening are over 99% accurate. We use the same CLIA-certified laboratories as major medical centers. After testing, your sample is destroyed. Only members of our clinical team see your result, but we encourage you to share results with your physician. Each test we offer has preventive, treatment, and/or decision-making options for positive testers. Question 2 depends on the test and the person. Question 3 is complicated — so I should probably blog about it!)

Anonymous or confidential testing is definitely a concern for some of our customers, but not the majority. We’ve had customers come to us after refusing testing through their doctor because of fear of discrimination, or because they or family members have already experienced insurance discrimination. Actual discrimination cases may be very few, but fear of discrimination is a very real perception, particularly among people considering BRCA testing. Given how powerful BRCA status info can be — for treatment decision-making, for prevention, for peace-of-mind — it pains me to think that people who want testing won’t get it out of fear. Fear shouldn’t get in the way of healthcare. Closing the holes in our legislation would give a lot of people more comfort.

5. DNA Direct has taken a proactive approach to educating the general public about genetic testing including your DNA Direct Talk blog and the Genes & Drugs website. Do you think other genetic testing, biotech, and pharmaceutical companies should do the same? Would you have any advice for them?

Absolutely. To me, success is getting an effective treatment to the appropriate person at the right time. The more people you can educate at each point in the process — patient, family, physician, pharmacist, administrator — the better the chances of success. In addition, it’s important to get all parties onto the same page. Healthcare may be increasingly “consumer-driven,” but effective healthcare is really a team effort. It’s trite but true. Trust, compliance, decision-making…the actions and decisions of each team member depend in part on the knowledge and engagement of the others.

Unfortunately, much of what goes for “education” these days is simply sales. As companies involved in something as vital as healthcare, we have an ethical responsibility not to sell indiscriminately. Focusing on things like clinical validity, utility, accuracy makes for a stronger company (or product).

My advice? Transparency – it keeps you honest and it builds trust. Education – when you’re committed to educating others, you keep yourself up-to-date. Involvement – staying active in the community you serve keeps you compassionate. Lastly, never underestimate the intelligence of anyone seeking information. If they don’t understand, it’s simply because you haven’t found a way to explain it properly.

Thanks, Lisa. Looking forward to seeing how DNA Direct navigates this century’s genome revolution!