September 29, 1995

Connie Mack, Florida.  co-chair


"The scientific knowledge of human genetic research is growing at a pace which far exceeds our understanding about what we should do with the discoveries once they are made."--Sen. Mack

Good Morning. Let me welcome everyone to this hearing of the Senate Cancer Coalition. Today, we will focus on the issue of genetic testing for cancer.

At the onset of this hearing, let me say that I believe the Human Genome Project has taken our country into a new era of biomedical research. Just ten short years ago, the idea of finding the location of the 100,000 human genes and 3 billion segments which make up the human genome was nothing more than science fiction. Today, it is science reality. Scientists have isolated genes which increase a person's likelihood for developing diseases such as breast cancer, ovarian cancer, colon cancer, and melanoma. We know the genetic links for Lou Gehrig's Disease, cystic fibrosis, Huntington's Disease, and a variety of other illnesses. This state-of-the-art research is a vital component of the National Cancer Plan and, as a member of the Senate Committee on Appropriations, I will continue to do my part to see that the necessary funding continues for the Human Genome Project.

I have been especially fascinated by the advances in gene therapy and immunotherapy. Steven Rosenberg's The Transformed Cell is not only a terrific book, but the science it describes is truly inspiring. For many years, if one were diagnosed with cancer the patient was basically given three treatment options -- surgery, radiation, and/or chemotherapy. Physicians would determine at what stage the cancer had progressed and determine which treatment, or combination of treatments, would be most beneficial.

As many here may know, Dr. Rosenberg's book describes how the immune system, in essence, sees cancer cells as natural cells to the body bgcolor="#FFFFFF" and, therefore the immune system does not attack them. The strategy of Dr. Rosenberg and his colleagues is to identify an antigen which sends a signal to turn on the patient's own immune system and attack the cancer cell. Thus, Dr. Rosenberg and his colleagues developed a fourth treatment modality -- immunotherapy, also known as biological therapy. Today, scientists are working on the fifth treatment modality -- gene therapy. We are just beginning to scratch the surface of this treatment. Genetic testing will undoubtedly be linked to gene therapy.

Two other books I've read, Altered Fates, by Jeff Lyon and Peter Gorner as well as the companion book to the television series, "The Secret of Life," by Joseph Levine, complement the research of Dr. Rosenberg and his colleagues. In just the past few weeks, The New York Times and The Washington Post each have published lengthy feature articles about genetics and cancer. The information is being disseminated to patients at a rapid pace, which I believe can only help those of us who support biomedical research funding

The scientific data and technology are here; but the social, ethical, and legal ramifications have only begun to resonate beyond the scientific community.

Put another way: the science of human genetics research is on the Concorde jet. Yet the legal, social and ethical debate about how to handle the information in our society is stuck at Kitty Hawk trying to get off the ground.

Some have likened the revolutionary progress we are making in genetic research to the development of the computer chip in its impact upon our lives. But unlike the computer chip, biomedical research isn't about machines. It's about each of us. It's about our children and grandchildren. It's about future generations we will never know.

As I've learned more about genetic research, I've thought a lot about my family. As some here know, my wife, Priscilla, and I are both cancer survivors. My mother and daughter are cancer survivors as well. My younger brother, Michael, died of melanoma at age 35.


All of this raises a number of questions in my mind. How should families like mine use the medical data and technology which are available today? Should we all be undergoing tests? What steps should my daughter, who is a survivor of cervical cancer, be taking to protect her children from cancer? What should I tell my son, who has not had cancer, but who must have a real fear of being the next member of our family to hear the words we have heard many times--"you have cancer"?

There are also far-reaching employment and insurance ramifications for families like mine. For example, what if an insurer or employer in the future were to ask them about our family's medical history, and then ask them to take a blood test to determine their genetic predisposition to diseases such as cancer? Should this be allowed? Should the information remain confidential? Should the genetic likelihood of developing a disease in the future be considered a pre-existing condition for medical insurance coverage now?

At the onset, let me say my initial reaction is that an individual should be free to choose to be tested in order to determine the odds of developing a disease in the future, and make decisions now based upon that information. But, I also believe that information must remain confidential.

Today, we will examine these important issues. It would not surprise me if we leave today's hearing with more questions than answers. However, I believe we must begin the dialogue in Congress now. there are too many decisions to be made in the future. The scientific knowledge of human genetic research is growing at a pace which far exceeds our understanding about what we should do with the discoveries once they are made.

Louis Pasteur once wrote, "I am on the verge of mysteries and the veil is getting thinner and thinner."

As that veil continues to disappear, we as a society must know how best to respond for the good of all people.

Let me take this opportunity to introduce my co-chair of the Senate Cancer Coalition, Senator Feinstein.

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