A recent NOVA program on PBS, Cracking Your Genetic Code, examined the rapidly moving developments in genetics research and the impact on the public and patients. The program, produced with The Hastings Center, a non-partisan bioethics research center, asked the question: “What will it mean when most of us can afford to have the information in our DNA—all six billion chemical letters of it—read, stored, and available for analysis?”
One clear message from the program was that science and technology have revealed an overwhelming mass of information since the completion of the first human DNA sequence nine years ago. While researchers have more data, and there has been some progress in understanding disease and developing treatments, we still have long way to go. Now that we know more about the human genome, in some ways, we actually know less. As researchers continue to explore the information, some commercial ventures are offering genetic analysis as an online purchase.
Among the many messages presented in the program, three stood out. The first is that bridging the scientific gap to bring the promising lead in the lab to a therapy or treatment for the patient is a long, complicated process not readily understood by the public. The second is that research organizations and drug companies need to temper the hype surrounding the excitement of a new discovery with the reality of the hard road ahead to testing and approval of a drug or treatment.
In the days surrounding most large research conferences, such as the recent American Association of Cancer Research’s annual meeting in Chicago, my inbox fills with press releases from pharma and biotech companies, universities, and research institutes, describing—in hopeful terms—the latest research advance, discovery, or progress. While a few press releases describe advances that are truly novel, most offer little information, insight, or real news about drug research developments.
I understand the challenges of a lengthy research process and the need to secure funding to continue the efforts. However, the accompanying public relations efforts need to keep in mind the ultimate goal—developing an effective drug to treat patients.
The third, and most concerning issue addressed in the NOVA program, was the legal, moral, and ethical dilemmas that the availability of personal DNA information brings. Would you want to know if you are predisposed to a certain disease? Will that information help you plan your life? Will it hurt your chances at getting a job if an insurance company tells your potential employer? Will you select a spouse based on their genetic makeup?
These questions make many people uneasy. The pitches of commercial testing labs, as profiled in the program, are also unnerving and according to some experts, unproven and potentially misleading to the public. Call me old-fashioned, but I’m not ready to order a potentially life-changing medical test (without a physician’s direction or advice) over the Internet as I would order a book, sweater, or lamp. I think I will wait for the hype to turn to hard science.
