Informed public debate critical to future of genomic
medicine Just mentioning "stem-cell research" or "genomic
medicine" can open a floodgate of beliefs, concerns and, misinformation.
Opinions are varied, mixed with fact and fiction, but one thing is clear: Open
dialogue among researchers, teachers and the general public must continue as we
struggle to define the relationship between our societal values and lifesciences
research. When the University of Washington .and the National
Human Genome Research Institute hosted a community genetics forum last spring,
questions abounded from the standing-room-only crowd about the implications of
genetic research. When is information about genetic health risks
most helpful Should genetic testing results be part of medical records and how
would the results be used potentially by insurance companies How can genetic
testing benefit the criminal-justice system, such as establishings guilt or
innocence using DNA testing, The Human Genome Project will lead
to amazing advances in medical science that will result in earlier diagnosis,
more-targeted treatment, and a dramatic improvement in our ability to prevent
terrible diseases. Genomic medicine will mean more personalized medicine
tailored to the individual. But these advances also carry
inherent risks. The obvious benefits of "personalized medicine"
—use of genetic tests to guide preventive care and better drug prescribing—are
counterbalanced by the possibility that such tests could lead to discrimination
by insurers or employers. And, since genetic risk is often only one of the
contributing factors to disease, overemphasis on personalized medicine could
burden our health-care system with genetic tests of little or no
benefit. For example, smoking, diet and exercise play major
roles in the risk of diabetes and heart disease. Identification of a genetic
risk for these diseases can provide specific information for more-effective
preventive care, but should not detract from pursuit of a healthy
lifestyle. The greatest health benefits of genomic research
likely will come from insights into the basic biology of health and disease.
This will ultimately lead to improved prevention and treatment—often without any
need for genetic testing—for many diseases. The outcome from this research can
be "precision medcine" —a morecost-effective approach to providing high-quality
care. Thus, genomic medicine has the potential to improve the value of health
care. An example of the potential of genomic medicine to improve
quality and reduce cost is the work of UW researchers Mark Rieder, Allan Rettie
and Debbie Nickerson. They recently reported the discovery of a genetic method
for accurately determining the proper dosage of a common blood-thinning drug,
warfarin, which often produces adverse side effects because of its highly
variable activity in patients. Millions of people worldwide take
worldwide to prevent stroke and blood clots, yet require expensive, constant
testing from their physician to ensure proper dosage. These scientists’ findings
illustrate how the powerful DNA analysis tools of the Human Genome Project are
leading to a new era of tailoring drugs and therapies to an individual’s genome.
Genomic medicine can lead to more-precise, personalized and cost- effective
health care. Medical advances always involve risk of harm, and
genomic medicine is no exception. While technical issues require scientific
research, we believe the challenges posed by genetic testing are far too
critical to be left to the deliberation of scientists alone. All
members of society should have the opportunity to engage in collaborative
discussion about the benefits and harms of genetic testing, Informed public
discussion is vital to continue advances that hold so much promise for improving
the value of health care~ Both educational resources and major
organizational efforts will be needed to create opportunities for open
discussion. But the most important resources are people’s time and their
willingness to invest it in these discussions. Researchers,
teachers and the media have an obligation to create opportunities for sharing
accurate, well-balanced information about potential uses of genomic
technology. The University of California and the National Human Genome Research Institute hosted a community genetics forum last summer.