Genetic Discrimination

Building a Public Conversation on the Meaning of Genetics

Jonathan Rhodes
Research Assistant
Institute on Biotechnology & the Human Future

Why Should We Care About Genetics?

Town hall meetings are commonplace during election cycles, as politicians roll up their shirtsleeves to get out and meet the people in a community forum. In the spirit of bringing the community together to share ideas, the Illinois Humanities Council (IHC) has commenced a year-long project designed to increase public knowledge of genetics. The initiative, entitled Future Perfect: Conversations on the Meaning of the Genetics Revolution, has been designed to engage citizens in conversations about advances in genetics and their impact on the individual and society. During the kick-off event, the IHC brought together experts and laypersons in an exploration of the basic question: "Why should we care about genetics?"

The Possibility of an Informed Debate

Jon D. Miller, professor of integrative studies at Michigan State University, opened the discussion by setting out the challenges. Chief among them is the difficulty of having an informed public debate on important scientific developments.

Miller framed the issue by asserting that the 20th century was "the century of physics," with Einstein's theories transforming the way we live in and think about the world. He then proclaimed that the 21st century will be "the century of biotechnology," during which scientific developments in biotechnology and nanotechnology will have the same potential to radically shift how we view the world and how we function within it.

During the biotech century, advances in genetics will alter the definition of health. And, over time, as these advances are assimilated into everyday discussions about health and well being, they will become fixtures in the public policy debate.

As the human foray into the 21st century commences, the current landscape of public knowledge, understanding, and engagement must be assessed. Over the past three decades, Miller's research has focused on measuring the general biomedical and genetic literacy in the United States and Europe. In town-hall-meeting spirit, Miller's presentation involved the audience in an interactive dialogue by way of a series of true-false questions testing scientific literacy in the area of genetics.

Two-thirds of the audience received a "passing" score. This "passage rate" was significantly higher than the "passage rate" Miller found in his studies of public scientific literacy. In these studies, Miller found such literacy highest in Denmark, with 47% of the Danish participants "passing." The United States came in at the middling rank of 28th among the 34 countries studied.

Such an outcome, Miller argued, is far too low for a democratic society. Informed debate about genetics or other complex scientific developments cannot occur if citizens do not have a basic understanding of the principles, issues, and terms involved. To achieve this, Miller advocated for a fundamental change in scientific education. The requisite changes include: teaching children the core skill sets - including analysis and critical thinking - that will enable them to grapple with the science and technologies of tomorrow; and offering ongoing, just-in-time, continuing education on science and technology for adults throughout their lifetime.

Taking the Good with the Bad?

Today, however, a classical understanding of genetics may not be sufficient to effectively manage health in a complicated scientific landscape. Rex Chisholm, director of the Center for Genetic Medicine at Northwestern University and the second presenter during the town hall meeting, articulated his belief that the public is ready for a more fully developed understanding of genetics.

According to Chisholm, modern-day genetics likely mean that drugs can be selected for effectiveness based on one's genetic makeup, but this will also likely mean that governments or corporations have access to this most personal information. Such information could lead to discrimination on many fronts. Chisholm asked the audience to consider whether the potential benefits of tailor-made drugs outweigh the potential stigmas.

Art as a Medium for Contemplating Science

Big questions about the role of genetics in public health need to be approached from diverse perspectives across disciplines. Liz Lerman, founding artistic director of the Liz Lerman Dance Exchange and closing speaker, suggested that the arts could serve as a bridge between the complexities of science and culture. In proving of this potential role for the arts, Lerman set out explore genetics through dance and other media. Through her contemporary dance work, entitled Ferocious Beauty: Genome, Lerman studied the effects of genetic disease on the body, including the unique movements of those affected by Huntington's disease.

The key to an informed debate about genetics turns upon understanding, and the key to achieving understanding is recognition of the different ways in which learning occurs. By utilizing novel approaches to learning, the arts can prove enriching in a way that other disciplines are not, according to Lerman. As a result, the arts offer an avenue for cultural exploration and meaningful exchange that is essential to public discourse on genetics and other emerging technologies.

Seizing the Opportunity

When science changes its mind, everyone is affected. And science changes its mind all the time, because that is what science is supposed to do in light of knew knowledge. As humanity embarks on what might be a genetics revolution, the ability to improve health will only be matched by the potential for the misuse of the technology. Developments in technology will inevitably cause disruption and change, impacting humankind on an unmatched global scale and in unprecedented, and likely permanent, ways. Thus, prospective and ongoing public discourse about the ethical, legal, societal implications of genetics is essential.

Jonathan M. Rhodes is a J.D. candidate at Chicago-Kent College of Law, expected to graduate in 2009. He is a research assistant at the Institute on Biotechnology and the Human Future and the Center on Nanotechnology and Society.