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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.