by Margaret Pericak-Vance '73

Ladies and gentlemen, President Ryerson, faculty, and most important, the graduating Class of 1998, thank you for inviting me to speak to you today. When I look out and see your faces, I see myself in 1973, about to graduate from Wells, excited, eager, ready to face the world, but also a little unsure. Well, I can tell you I have had an exciting journey since my days at Wells, and I would like to share a little bit of that with you today.

I am lucky enough to have chosen a career - one inspired by my experiences at Wells - that has blossomed into a story as thrilling, as breathtaking, and sometimes as scary, as any Hollywood blockbuster. That field is human genetics. I have been privileged to participate in discovering - no, not dinosaur genes, that really is all Hollywood - but the inherited components, the genes that lead to diseases like Lou Gehrig's and Alzheimer's.

It is incredibly exciting work. I get to be a detective every day; but it is also heartbreaking, because my work involves real people, not just test tubes: people who have real medical problems because they were unlucky enough to inherit a genetic defect. So a lot of what I do has real urgency. We are trying to find genes as a first step in curing diseases that affect many people.

Of course, when I was your age I could not have predicted I would have this career. Much of the path I have traveled seems like chance. I want to tell you today that I am proof that from Wells you can go anywhere and do anything.

In 1969, when I was looking for college campuses, I focused on several New York State colleges: Vassar, the University of Rochester, and Wells. I was intrigued by what was then a new offering at Wells called the four-one-four program. In this program, you could take four courses both in the fall and the spring from the regular curriculum. During the month of January, however, you were able to study anything from alchemy to theatre arts in London, or you could design your own course.

I have always been the independent type, and this last option sounded intriguing. It turned out to be one of the major factors in helping me to choose Wells over both Vassar and Rochester. Little did I know that both this special program, as well as Wells, would change my life and head me in a direction I did not even know existed. I did know early on that I wanted to major in the sciences; however, I did not see myself as a chemist or a physicist, and that left biology. The biology major at Wells provided me with many opportunities. I had the opportunity to go to Jamaica during my first January term to study tropical biology. This wonderful and memorable experience was only saddened by the sudden death of Dr. Henry Radloff, then the department chair, shortly after our return.

My second year as a science major included courses in organic chemistry and ecology, and I was not particularly enamored. After the long winter months in Aurora, being stuck in organic chemistry lab on the second floor of Zabriskie on a beautiful spring day was not exactly what I had envisioned. I started thinking that maybe studying biology was a mistake. I was bored and disillusioned. Let me just say that during this time I probably would not have won the award for being the model Wells student, but just when I really doubted my choices and myself everything changed.

The next semester I signed up for genetics, which was an optional part of the curriculum. I do not remember why, but by some quirk of good fortune I chose to take it. I became consumed with the subject matter. Nothing else had piqued my interest like this course. I was particularly intrigued with human genetics, but this was only a tiny portion of our material. I wanted to go further, but human genetics was still a new field, at least at the undergraduate level. Here is where the four-one-four program worked so well. Sharon Solish, a classmate of mine, was the daughter of a physician at the Downstate Medical Center. Dr. George Solish was a pioneer in studying the behavior of chromosomes - the carriers of the genetic code - in human cells. With Wells' help I arranged a one-month internship during my January term. During this month, I did laboratory work and was able to observe counseling sessions with real patients who had genetic problems. I was hooked. I spent my senior year frantically searching out graduate programs where I could continue my studies. There were not many. While today the terms DNA and genes are household words, back then human genetics was in its infancy. No, I am not that old. The field of human genetics is that young.

Things have changed in the few years since I was a student. Human genetics has developed into an established discipline, and the field is moving faster than ever. Genetics is no longer hidden in an ivory tower. It touches everyone, and it will touch your generation more than your parents' generation. It will be a part of everyone's life. This is what I want to talk about today. I would like to give you a glimpse of what is happening in genetics right now and what is coming soon - some of it by the time your freshman classmates are sitting where you are today. By then we will be in a new millennium. I would like you to walk away today with a vision of what that new millennium could bring, both the promise and the problems facing human genetics.

Imagine sitting in your doctor's examining room five years from now. You hold out your arm and avert your eyes as the nurse draws a small vial of blood. From that blood sample a technician will extract your DNA, the storehouse of genetic information. Minutes later the doctor returns with your report card. (You thought that after today you were done with those, but this will be your genetic report card.) Among the highlights: The anti-obesity gene therapy is working nicely. Your weight is down, and you no longer get hungry between meals. No problem with mutated cancer-causing genes, but your cancer-fighting antioxidant genes are working below average. The doctor prescribes a new regimen of cabbage and broccoli to boost your antioxidants and tells you to keep at that treadmill. Science fiction or science fact? Perhaps a little of both. One thing is for sure; it is coming sooner than most people realize.

This year's newspaper headlines attest to the speed with which genetic technology is leaping from the laboratory to doctors' offices. A sheep named Dolly captured the attention of millions, and a woman from Iowa made history by giving birth to seven children through assisted reproductive technology. New genes for Alzheimer's disease, breast and ovarian cancer, and many others appeared weekly. Over the past two decades molecular biology, computer systems, and the Human Genome Initiative have helped scientists like me and many others around the world unravel the genetic basis diseases.

Today scientists are mapping the genetic components of complex diseases such as cancer syndromes, susceptibility to HIV infection, asthma, and Alzheimer's disease. Within the next five to ten years, the genetic report card will be more than a science fiction writer's fantasy, it will be a reality for which we must prepare. The technology to test for genetic defects is already with us. We have genetic tests for hereditary breast cancer genes and many other genetic disorders.

Some would even have us believe they can find genes that make us more intelligent, make us greater risk-takers, and make us more likely to become alcoholics. While this type of research is catchy and makes headlines, history has taught us that labeling people in this way leads us down a slippery slope of ethical dilemmas that I hope we agree must be avoided at all costs.

We cannot speak about genetics without discussing eugenics and the atrocities of the past that were associated with abuse of genetic information. Protections for people participating in scientific studies were not developed until the mid-1940s, following the Nuremberg trials in Germany. These trials exposed the horrors of forced and dangerous research on individuals of Jewish and other descent during the Nazi regime. In the United States, the infamous Tuskegee syphilis study reflects similar abuses that took place with a vulnerable and undeserving population. Research subjects affected with syphilis were denied antibiotic therapy even though Penicillin had become the treatment of choice. Subjects were also recruited with misleading promises of free treatment and were enrolled in studies without their informed consent.

The difference between the past and now is freedom of choice. Today, each individual has a right to choose the knowledge that she or he carries genes which might lead to heart disease or cancer. Learning about your genetic profile is something you will voluntarily undertake. No one should be forced to learn about his or her genetic make-up, even by another family member.

I would also like to touch briefly on what I think will be the broadest reaching consequences of finding genes that predispose people to common but debilitating diseases like heart disease or cancer: that will be the ability to help people prevent diseases from developing - what we call preventative medicine. Medicine as we know it is already changing radically. Within your lifetime, your DNA profile will become a large portion of your medical record. Right now, there are companies that can put the entire genetic code on a silicon wafer, similar to the one in your personal computer. In a few years, it will be possible to put a person's entire genetic makeup on a chip that can be scanned in moments for genetic susceptibility to disease.

Genetic testing for common diseases will become the standard practice. I tell you this because it is coming soon, very soon. Knowing this information can be frightening, but it also offers new opportunities to live a longer and healthier life. Genetic information will allow doctors to tailor treatment to each individual.

For example, right now women with breast cancer have several options for treatment, but breast cancer is not one disease. There are many different genetic changes that can lead to breast cancer. In the past, doctors gave everyone the same treatments. Sometimes the cancers responded and sometimes, tragically, they did not. Women lost their lives. Now we are beginning to understand these different genetic changes and why some cancers do not respond to some treatments. Doctors are already beginning to use genetic information to make sure breast cancer patients have the best odds at beating their disease.

Alzheimer's Disease is another disorder which has benefited from the technology and innovations that have recently emerged. Less than a decade ago when we at Duke first undertook the challenge to decipher the Alzheimer's disease riddle, we were met with skepticism and disbelief. How could such a common disease involve a significant inherited component? Instead of being disillusioned, however, we pursued vigorously. Our persistence paid off with the identification of the first major genetic risk factor for a common disease, a disease that touches nearly everyone. How many of us do not know a friend or relative who suffers from this tragic affliction of the elderly?

The results of our work are already being realized. For example, preliminary data suggests that an Alzheimer's patient's response to drug therapy might be dependent on their genetic make-up. Thus, tailored treatments for subsets of patients based on their personal genetic risk profiles could prove to be highly successful in combating Alzheimer's Disease and other diseases in the future.

One of my colleagues is searching right now for a gene that predisposes some women to have babies with a particular birth defect in which the spine does not form correctly. We know that if a woman takes extra folic acid, a B vitamin, during pregnancy, the chance of having a baby with this defect is greatly reduced. If we knew the gene defect that puts these women at greater risk, we could identify women who need even more folic acid before and during pregnancy.

As this deluge of information begins to come into the marketplace, we need to ask the question: What is being done to educate, inform, and engage people in an open debate about what such information could mean to them and to their children? This is a critical time in the development of human genetics. This field will transform medicine and, perhaps more important, challenge the way we view our ethical and moral imperatives and ourselves. It is an exciting time, one of rapid change, and one of incredible opportunity.

I can tell you this because I have been riding this wave since my days at Wells. I want to emphasize that the field of human genetics has offered and continues to offer open doors to creative, enterprising women. Because this field is so young, women have been pioneers in genetics since its inception and have made many major contributions. From as early as 1962 when Dr. Mary Lyon proposed the seminal Lyon Hypothesis regarding X-chromosome inactivation to the more recent contributions of such women as Dr. Nancy Wexler (who has pursued the deadly killer, Huntington's disease, into the jungles of Venezuela), Dr. Mary Claire King (who is relentlessly pursuing the genetic causes of breast cancer), and Dr. Patricia Jacobs (who pioneered the study of human chromosomes), women have been at the forefront of this important scientific field.

Of course, I realize most of you will not choose a career in human genetics, and many of you who are wondering what this has to do with you. It has everything to do with you because everyone is likely to possess some genetic predisposition to a common illness, and thus everyone will be affected by decisions concerning how this information will be handled. Crucial medical, legal, ethical, and social decisions must be made in the next few years that will guide the impact of genetics in our society.

These decisions cannot and will not be made solely by people like me, the scientists. You must get involved. You should try to understand what genetics will mean to you and your families. Genetics is not dry science in an ivory tower that does not involve you. It is about families, the ties that bind us together. It is about your health, your parents' health, your children's health, and the future of your children not yet born.

We scientists stand positioned to make major changes in medicine; but we have, in a sense, the easier role. The question is: Are you ready to grapple with what this means for you?

I wish I could tell you what it might mean, but this is uncharted territory for all of us. I cannot begin to predict what will happen after we have decoded the entire human genome, a feat that will be accomplished easily within the next decade.

Many people fear that insurance companies and prospective employers could use genetic knowledge against them. Several bills winding their way through Congress are attempting to pre-empt this type of genetic discrimination, but no law can protect people from the ethical dilemmas that will be thrust upon us by this information. Thousands of researchers are searching for genes, while only a handful are struggling to understand how to counsel people on the receiving end of such knowledge.

What, for example, are the ethical implications of informing individuals of their genetic susceptibility to a disease for which there is no known therapy or preventative strategy? What are the legal rights of individuals to determine who has access to their genetic profiles?

These are serious issues that will be decided in the next few years. It is my hope that by sharing just a little of my vision of how genetic information offers hope for serious, now deadly or incurable diseases, and healthier lives for you and your children, you will become involved in these issues and help us find solutions.

In conclusion, I would like to thank Wells for the knowledge and experience I acquired during my tenure as a student. The ability to go after my dreams and never short-change myself because of my gender, in part, grew out of my Wells experience. I have fond memories of both family and friends, and the feeling of always belonging to the Wells family. I have been extremely fortunate in the choices I have made both in my personal and professional life. I have a wonderful family. My husband, Jeff, and daughter, Danica, both of whom are here today, and my son J.J., who is in a soccer tournament in Erie, Pennsylvania, are tremendously supportive of the many roles I must play. I also have a career that allows me to wake up and look forward to going to work each day. As I look out at the graduating class and see the hopes and dreams on your faces, I would like to leave you with one message:

As we move into the next millennium, more so today than even in my generation, as a woman, you can have it all and do it all, but most important, you have to try. True success is trying and knowing that you have done your very best. You have the opportunity to shape the new millennium. Wells College has given you rich resources on which to build your future. I wish you all the best of fortune, good health, and a fulfilling life down whatever path you follow. Good luck and thank you.

Delivered Saturday, May 23, 1998