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Tackling a big subject in a small package: Pondering the genome

The word "genome" looks no more or less intriguing than any other word in the dictionary. Its definition is modest—longer than some, but shorter than many. In Webster's Collegiate Dictionary, for instance, only 10 words are used to describe the meaning of "genome." And all 100,000 genes in the human genome fit into the nucleus of a cell too tiny to see with the naked eye. How can such a small thing be endowed with the power to draw the world's unwavering attention?

Implications: Pondering the implications of that power was the charge of a recent gathering at Dartmouth. For two weeks in June, 20 faculty members from colleges and universities in 12 states and two countries gathered in Hanover, N.H., to explore the ramifications of deciphering the human genome and to learn from each other how to compel others to consider those issues with reasoned fascination, with intellectual insight and moral instincts, and without fear and loathing.

These individuals, chosen from more than 100 applicants, were the participants in this year's Faculty Summer Institute at Dartmouth, called "Teaching the Ethical, Legal, and Social Implications (ELSI) of the Human Genome Project."

DMS has been at the forefront of genomic ethics since 1990, when the National Institutes of Health (NIH) awarded Dartmouth the first grant to address the ethics of the Human Genome Project. The ELSI Summer Institute (which is itself funded by an NIH grant) has been in existence in one form or another since 1996, and a number of DMS and Dartmouth College faculty are routinely asked for expert commentary by journalists seeking to interpret this brave new world.

Fitting: The summer day the ELSI group convened at Dartmouth was, coincidentally but fittingly, the very same day the world learned that the race to decipher the human genome was over. During that momentous announcement, Francis Collins, director of the National Human Genome Research Institute, said, "We have caught the first glimpses of our instruction book, previously known only to God." The ELSI attendees clearly had their work cut out for them.

The ELSI Institute prepares college and university teachers to teach undergraduate courses on the ethical, legal, and social implications of genomics. A popular course offered at Dartmouth in 1997 and 1998 serves as a model. The goal of the two-week institute is to provide teachers from diverse disciplines with fundamental "literacy" in ELSI issues and with the skills and tools to stay abreast of a fastchanging field.

"This is, unquestionably, the era of genetics," observes Ronald Green, director of Dartmouth's Ethics Institute, sponsor of the ELSI program. "This will occupy us all for the foreseeable future."

Coming from disciplines as varied as sociology, anthropology, biology, philosophy, law, and ethics, this year's ELSI participants grappled with questions such as: Why do we want to study our genes? Who should have access to my genome? Who owns the genome? Should we be changing our genes? The themes arose from the universal realization that recent developments in genetics now provide humans with the potential to reinvent nature, and ourselves.

The goal for the ELSI participants —who came from institutions small and large, including Bucknell, UCLA, Duke, Tuskegee, the University of Florida College of Law, and Queensland University of Technology in Australia—was not to search for a single right answer to those questions. In fact, there are many right answers as well as many more questions.

Complexity: "A number of good things will come as a result of knowing all the genes in the human genome, just as there have been a number of good things that have resulted from being able to split the atom," DMS geneticist Jay Dunlap, Ph.D., has noted. "But the results are not going to be all good. Yet we can't pretend that we shouldn't split atoms any more than we can pretend that we don't want to know what all genes do. It won't be as simple as developing antibiotics was—as intellectually or morally simple—because it was clear who was sick and who wasn't. With genetics, we'll find that we're all sick."

Ron Green, head of Dartmouth's Ethics Institute, leads a discussion about genomics with a rapt group of faculty from other colleges and universities.

Photo by Bonnie Bragg (website)

The intent of ELSI was to foster "a dialogue that is informed by the many points of view," notes Green. He says that means deliberately seeking a very diverse group of participants, and one with a strong minority presence. Finding a common language across cultures and disciplines is the essence of considering the human genome's impact, Green says. "We need people to be coming to this table from many perspectives, not with closed minds, but with a perspective that tolerates the viewpoints of others."

In collaboration with Dartmouth experts from molecular biology, genetics, genetic counseling, ethics, and policy-related disciplines, the ELSI participants considered many provocative topics. The group heard formal lectures and panel presentations and also met in small-group and one-on-one settings.

In the future, says Green, "we want to build in more 'air time' —more time for deliberation. These participants are too good to be passive, and we need to give them time to work with the information and models we offer. We want them to model good teaching, and we can provide a stronger model for that."

Ideas: ELSI attendees are expected to return to their home institutions with ideas they can turn into courses and other programs that will equip their own students to help determine how humankind's evolving knowledge of genetics is used.

Already, 60 ELSI "graduates" are back at work throughout the U.S. and around the world. Now, Green explains, the hope is to begin reaching not just teachers, but teachers of teachers, so more and more people can become conversant with these weighty issues. He pauses in mid-thought and then grins as he borrows a concept from the ELSI syllabus, concluding, "Basically, we want to clone this program."

Sandy Adams

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