Knowing more about a gene’s responsibility will stir up a swarm of controversy

Sep 1 2004

Pinning down how genetics contributes to behavior is slippery business. For instance, identifying the genes linked to a likelihood of developing schizophrenia or autism could stigmatize those who possess the genes, and may even play a role in defining the conditions themselves.

Mildred Cho, PhD, associate director of the Stanford Center for Biomedical Ethics, is helping bring the ethical consequences of behavioral and neurological genetics to the forefront of the research process. Cho has received $3.8 million from the National Human Genome Research Institute – part of the National Institutes of Health – to establish a center of excellence to study the ethical, legal and social implications of genetic research. Stanford is one of four universities to receive the initial funding for a center and is the only one focusing on studies of behavior.

Cho, a senior research scholar, will lead the new Center for Integration of Research on Genetics and Ethics at Stanford. Her team will concentrate on the challenges associated with viewing neurological conditions as being hard-wired into a person’s DNA rather than, for example, being a product of exposure to environmental triggers.

One of the center’s early projects will involve autism, a developmental disorder that impairs the ability to form normal social relationships. While it was once thought that an emotionally “cold” mother led to an autistic child, there is now evidence of a genetic component to the condition, said Cho. A group led by Judy Illes, PhD, senior research scholar in biomedical ethics, and Joachim Hallmayer, MD, associate professor (research) of psychiatry and behavioral sciences, will examine how social and ethical dimensions of this paradigm shift affect patients and families and will also survey the research being done on the issue.

The main themes of the center will be behavior and neurogenetics, addressing questions such as how genetic research impacts human identity and “what kinds of genes make humans human,” Cho said, as well as the implications of genetic research to modify or enhance behavior.

Data being generated by sequencing the DNA of a range of species allows for broader exploration of the differences between human and non-human primates. Although much is already known about human behavior through the field of anthropology, she said, researchers can now ask how much of a role genetics plays. But these types of studies raise ethical questions, such as whether to alter the genomes of non-human primates to make them more like humans.

Knowing more about a gene’s responsibility for behavior can also stir up a swarm of controversy, according to Henry Greely, professor of law and a co-investigator on the NIH grant. Greely pointed out that neurogenetics might give researchers the ability to make predictions about a person’s cognitive abilities or predilection for mental illness – predictions that could be abused by the health-care system, the criminal justice system, schools, businesses and even parents.

Despite the magnitude of ethical dilemmas that genetic research may pose, there are few forums in which geneticists can discuss their quandaries with an interdisciplinary team, said Cho. One of the new center’s primary goals is to encourage genetic researchers to think about big-picture implications before they conduct their studies. “I really hope we can contribute by developing ways for researchers to interact with ethicists, lawyers and philosophers,” she said. “I hope that someday it will become a normal part of the research process.”

Cho’s team aims to produce the tools needed to make the process of ethical consultation accessible and practical. Planned projects include a Web-based interactive tool that allows for video conferencing and real-time chats to create a virtual “benchside consultation” service for geneticists to address ethical and social issues raised by their research. They are also producing documentary films that provide training on research ethics.

Additional co-investigators from the Stanford Center for Biomedical Ethics are: Margaret Eaton; Maren Grainger-Monsen, MD; Barbara Koenig, PhD; Sally Tobin, PhD; Thomas Raffin, MD, and David Magnus, PhD. Marcus Feldman, PhD, professor of biological sciences at Stanford, is also a co-investigator.