Kenneth P. Serbin, PhD
History professor reveals himself as "Gene Veritas,"
well-known gene positive, Huntington's disease advocate
His decision to speak publicly was not one that he took lightly. Kenneth Serbin, PhD, professor and chair of USD’s Department of History, waited to share the news of his genetic test for Huntington’s disease for more than 13 years, until he and his family felt the timing was right. With the support of his family, the passage of the Genetic Information Nondiscrimination Act of 2008, and marked progress in societal views of genetic diseases, Dr. Serbin wrote his first bylined article about HD, entitled, “Racing Against the Genetic Clock” for The Chronicle of Higher Education. A long-time advocate of Huntington’s disease research and education, Dr. Serbin was well-known in the Huntington’s community for his blog, but until the publication of his Chronicle article in November 2012, he maintained a dual identity as Kenneth Serbin and Huntington’s activist “Gene Veritas,” his online pseudonym.
We talked with Dr. Serbin about the decision to share his story and how his academic passions have melded with his role as Huntington’s disease activist.
For years you wrote about Huntington’s disease using the pseudonym Gene Veritas, and now with the publication of your Chronicle of Higher Education article, you have merged your academic and personal lives. How do you feel?
It is a completely new experience and a relief to finally be able to integrate these two spheres of my life – Gene Veritas (“the truth in my genes”) and Ken Serbin, a professor who has been teaching at USD for twenty years. I had a firewall between these two spheres for about 17 years, which is how long I have been working as a Huntington’s advocate. Shortly after my mother’s diagnosis, I went underground with the disease because I feared genetic discrimination. To be able to speak about it now is a very liberating experience. You’ll have to ask me again in six months because it’s an ongoing process.
What has the response been to your article?
Overall, it’s been very positive. My apprehension before the article was published was quite high. I was worried about how people and my colleagues were going to react because they did not know about my life as Gene Veritas. My colleagues have been supportive and offered me best wishes. It’s also been a way to get to know them better. Some have since shared their own stories of dealing with neurological diseases in their own families. Millions of people face problems with other neurological diseases like Alzheimer’s, Parkinson’s, Lou Gehrig’s disease and even victims of stroke. All of these diseases need to be researched and need the kind of support that the Huntington’s Disease Society of America (HDSA) provides to our community.
The Huntington’s Disease Society of America named you Person of the Year in 2011. Can you describe your involvement with groups like the Huntington’s Disease Society of America and the CHDI Foundation?
HDSA has meant a lot to my family and me. It was started as a series of support groups, which is how I was first introduced to the group after my mother was diagnosed in 1995. One of the first persons I talked to about this was the San Diego chapter president, and that’s where I was first able to find assistance with how to deal with this disease – especially because there is no treatment or cure at this point. And that is just devastating knowledge to learn that your mom, and maybe you, will have this disease, and there is no way to stop it because it is 100 percent genetic.
CHDI is a private, non-profit biomedical group that is supported by a group of anonymous donors, whose sole purpose is to look for treatments for Huntington’s disease. It’s been important to my process because I was the 2011 keynote speaker for the CHDI conference, and that was the first time I got in front of a large crowd and spoke about my situation. CHDI is helping to revolutionize Huntington’s research and helping to get large pharmaceutical companies involved. With an orphan disease like Huntington’s, companies do not make profits off drugs, so few companies are interested. But CHDI has gotten a number of key pharmaceuticals involved – including one here in San Diego.
In your article, you mention that you at first hesitated to be tested for the Huntington’s gene. Can you tell us about your decision-making process to undergo testing?
I actually wanted to get tested right after I found out about my mother, but I was quickly counseled by an HDSA support group and my mother’s geneticist, and they said that getting tested at that point – in the 1990s – would have been a risky proposition. If I ever had to switch jobs, I might not have received medical insurance coverage because it would have been considered a preexisting condition. There was also the risk of genetic discrimination – people thinking, “He’s going to experience symptoms of this disease in X number years, so we are not going to hire him or we’re not going to promote him.” I was advised to think carefully about the decision, and I did. It was about four years before I went through with testing.
I feel that if you have the knowledge, you can be proactive. My mother did not know that she was at risk for the disease. Because of the way genetics works, the disease can seem to appear suddenly in a new generation. My wife and I were, of course, devastated that I tested positive, but with the information, we were better able to plan for our family.
Bianca, my daughter, tested negative, and that was the happiest day of our lives not to have to worry about that. Today, she is now a seventh grader at the Bishop’s School talking about being a lawyer or criminal investigator. She is interested in photography too. No matter what her future career, she will not have to worry about Huntington’s affecting her and her children.
You urge others to strive for a world in which science can conquer disease. How do you think others can get involved in the fight against neurological diseases like Huntington’s?
Disease support organizations like the Huntington’s Disease Society of America need donations. If anyone would like to donate towards the search for treatments and a cure and support services for Huntington’s families, please visit www.hdsa.org. Every dollar counts. It’s extra time in the lab for a researcher working towards a cure.
People can also get involved by becoming aware of how these diseases come together. If you add up all the neurological and genetic diseases, it’s millions of people who are affected by these conditions. We need a greater awareness and greater emphasis on research in this country, particularly of the brain. I like to say that the brain is our greatest natural resource. It’s not oil or wind, but it’s our brains that are our greatest resource. If we do not protect this resource, it will become overwhelming burden to care for all of the people affected by these conditions.
How does the pursuit of scholarship in your professional life impact how you deal with Huntington’s disease?
That is really the untold part of my story. Even though I had these two separate spheres between Ken Serbin and Gene Veritas, in my mind they were always working together and reinforcing each other.
My knowledge as a scholar of Brazil, including interviewing people who had been tortured by the Brazilian military dictatorship, allowed me to be more sensitive toward basic human tendencies and basic human rights. It helped me think about Huntington’s as a social movement. Everyone – doctors, patients, researchers, gene-positive people, HDSA, CHDI – bands together, which is what we in the social sciences and humanities refer to as a social movement. This has given me a little bit of political savvy as an advocate. I was also inspired to study the life and writings of Pierre Teilhard de Chardin, the French Jesuit priest who was also a paleontologist. He was responsible for changing the Catholic Church’s view of evolution. He sought to combine of faith and reason and helped eliminate the difficult confrontation between science and religion. He talked about the idea of a “thinking layer” that covers the earth. He believed that by nature men and women are researchers. He inspired me to rethink my Catholic faith and approach Huntington’s disease not just from the vantage point of science, but also from the perspective of religion.
- Leslie Hammann