Arches. Photo by Daniel Chia
HOPES: Huntington's Outreach Project for Education, at Stanford
Jul
10
2013

HD in the New York Times: “The DNA Age – Facing Life with a Lethal Gene”

This article was published on March 18, 2007 on the front page of the Sunday edition of The New York Times. The full article can be found here.

In 2007, the Sunday edition of the New York Times had a circulation of approximately 1.6 million. This meant that on Sunday, March 17 of that year, millions of readers across the world were introduced to Huntington’s disease (HD) by the front page article that was titled “The DNA Age – Facing Life with a Lethal Gene.”

The article, which ran at nearly 5000 words long, told the story of 23-year-old Katherine Moser, who had just tested positive for the gene for HD. Moser first became aware of the fact that HD ran in her family when her great uncle was diagnosed with the disease. Her own maternal grandfather began showing symptoms at the age of 50, but Moser’s mother refused to get tested, despite the fact that two of her sisters did (one sister tested positive and the other tested negative).

In the article, Moser explains that her mother did not want her to get tested either because if she tested positive, that meant that she must have inherited the gene from her mother. So Moser’s test results had implications not only for herself, but for other members of her family as well.

Eventually, after completing college and distancing herself from her mother, Moser made the decision to be tested at Columbia University Medical Center in Manhattan, and found out that her “CAG number” was 45, thereby indicating that her body contained the altered form of the huntingtin protein and that she would eventually start showing symptoms of HD.

Moser goes on to live life with the knowledge that she will eventually be developing HD. She actively chooses not to get married, works toward paying off her student loans as quickly as possible, and does what she can to seek support and teach others about HD. The article details her journey.

Despite only focusing on one individual who has yet to show the symptoms of HD herself, this New York Times article is fairly medically accurate in its description of the disease. The article provides a brief but factual description of HD as a trinucleotide repeat disorder by stating that on the fourth chromosome, “the letters of the genetic alphabet normally repeat C-A-G as many as 35 times in a row. In people who develop Huntington’s, however, there are more than 35 repeats.” It does, however, fail to mention the nuance that while individuals with 40 or more repeats do have the altered huntingtin protein, outcomes vary for individuals with 36-39 copies. However, this technicality doesn’t really come into play since it is revealed that Ms. Moser has 45 repeats.

With respect to maintaining medical accuracy, it is also important to note that while the article and the quotes contained in it refer to HD as the gene or disease that will kill Ms. Moser and other members of her family, medically speaking most people with HD do not die as a direct result of the disease. Rather, they tend to pass away from problems that arise as a result of the degenerative effects that HD has on the body. HD patients tend to die from an inability to fight off medical conditions such as infections and pneumonia.

The article does, however, do a good job of properly describing HD symptoms in a way that makes sense to the general public. Rather than using terms such as chorea to explain the uncontrollable movements that can manifest during the onset of HD, the article simply states that HD causes “cell death in the brain, leading Huntington’s patients to jerk and twitch uncontrollably and rendering them progressively unable to walk, talk, think and swallow.”

As mentioned above, in addition to medical aspects of the disease, the article delves into living with the knowledge of being positive for HD, and how that affects an individual’s decision making. Moser describes the various emotional stages that she went through after receiving her test results, including anger and an inability to face HD patients at the nursing home where she worked, but she makes it clear that she does not regret making the decision to get tested. However, the article does not make light of the genetic testing and explains to readers that choosing to get tested is a serious decision, and it is revealed that Ms. Moser was required to attend genetic counseling sessions and see a psychiatrist before getting tested.

Another important aspect of the article is that it discusses the family planning issues that arise after HD is diagnosed. Moser comments on how difficult she finds dating to be now that she knows she will develop HD in the future and she even mentions seeing a therapist who tells her that it is her “moral and ethical obligation not to have children.” This statement by her therapist is unfair and biased, and the article does touch upon that, mentioning that there are now new reproductive technologies, such as prenatal diagnosis and preimplantation genetic diagnosis, that can allow couples to ensure that their children will not have HD. However, options such as adoption, surrogacy, and sperm donation are not discussed.

Overall, the article provides an effective overview of life with HD for the general public, and serves its purpose in educating the masses about both the medical and lifestyle aspects of HD.

R. Reddy 2013