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Home > Features > Grappling with Genetics
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Grappling with Genetics
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by Caroline Lieber
Director, Human Genetics Program
Sarah Lawrence College
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| | The Expanding Frontier of Human Genetics
After 18 years of working as a genetic counselor in a clinical setting, my focus has switched from educating patients to educating others about genetics. My experiences with a variety of educational programs have convinced me of the pressing need to broaden the awareness and understanding of genetics to a wide variety of audiences.
First, there is a need to reach out to the school-age population to make them aware of the human genetics field. High school and college students introduced to genetics in a more engaging way may choose a career in genetics, which will foster diversity and increased numbers of genetic health professionals. The need to attract qualified individuals from diverse backgrounds to the genetics field is escalating as the frontiers of human genetics expand.
I have also gained a greater appreciation of the need to develop alliances with other health care professionals and to provide guidance in appropriately identifying patients in their clinical practices who are in need of genetic services.
Finally, there is a great need to educate the community at large. Those of us in the genetics field must impart our growing body of genetic knowledge to consumers while correcting misconceptions about what clinical genetics can achieve; we need to interpret intimidating genetic information to consumers in a sensitive and comprehensive manner, giving them the tools to make appropriate health-related decisions for their lives. Consumers need correct genetic information related to health concerns and reproduction and such "hot" topics as cloning. The greater the appreciation of genetics and all of its implications, the more informed consumers will be about the profound decisions they may have to make. The greater the availability of accurate, up-to-date information, the higher the likelihood there is of identifying previously unknown barriers to client care and thus implementing novel solutions.
Our Genes/Our Choices
Recently, I have had the privilege to work with the Fred Friendly Seminars on their three-part PBS series, Our Genes/Our Choices. This series explores some of the prickly topics brought to light by the abundance of information coming from the Human Genome Project. As a society, we are flooded with information about our inborn nature, about our genes and what at the simplest level they do; there is a danger that this surfeit of information will overwhelm us. At stake are vast reaches of medicine, law, public policy, and ethics, as well as the values that guide our basic understanding and expectations of ourselves, our families, and our society -- who we are, and what it is to be human.
How do we re-create, at a higher level of complexity, the sense of ourselves that was once implied by that phrase, nature versus nurture? How do we alter the misconception in the minds of many that our destiny is written in our genes? How do we communicate that one of the most notable promises of this great scientific and intellectual endeavor is to describe more vividly than ever the interaction of nature and nurture?
To begin this task is the central concern and purpose of this television series. The three programs -- Who Gets to Know, Making Better Babies, and Genes on Trial -- feature eminent panelists who are asked to play roles in hypothetical scenarios that are closely related to their own professional lives. The issues discussed include privacy and access in the genomic age, evolving reproductive technologies, the use and abuse of genetic information, and genetics and justice. The panelists speak not only from their own expertise but also assume roles in the hypothetical, usually relating to their professional work or their own lives. For example, in the first program, Who Gets To Know, the panelists assume roles set up by the moderator, Harvard Law School professor Arthur Miller. Each panelist becomes involved in Miller's hypothetical family history of cancer as they become
his brother or sister, his fiancée, his lawyer, or his business partner. They struggle over the dilemmas he faces. Should he have a genetic test? If the test comes back positive, whom should he tell? Does he have an obligation to tell family members? What about his fiancée?
From a teaching perspective, this format serves as an excellent illustration for teachers, other professionals, and the community at large to use in class or discussion groups. This Socratic format compels us all to confront the issues and ethical dilemmas presented. The Viewer's Guide offers a constructive starting point for a teacher or group leader, posing questions similar to those in the programs and then suggesting strategies for expanding the discussion to encourage group members to think deeply about the broader issues raised. Visit the Our Genes/Our Choices Web site below in "See also" for additional resources. Whether you're a student or teacher, a doctor or lawyer, a parent or grandparent, genetic technologies are changing your world. Our Genes/Our Choices is designed to engage Americans in an essential dialogue about the implications of this new science for our health, our families, our laws, and our society.
Our Genes/Our Choices, a Fred Friendly television series on PBS, will air nationally beginning in January 2003. To view local listings, visit the Our Genes/Our Choices Web site below.
Caroline Lieber is a 1980 graduate of the Human Genetics Program of Sarah Lawrence College, received her American Board of Medical Genetics (ABMG) certification in 1982, and is a charter member of the American Board of Genetic Counseling. Prior to accepting the position of Program Director, she was a genetic counselor at New York Hospital Cornell and Hackensack Hospital/Hackensack University Medical Center. She became Director of the Human Genetics Program at Sarah Lawrence College in 1998.
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