Barbara Palys, IACFA Chairperson and CFRI Advisor
Barbara Palys raised concerns about the burgeoning field of genetic science and its application to cystic fibrosis. Her discussion centered on a number of ethical and political issues of applied genetics, specifically regarding gene therapy and genetic screening. Is cystic fibrosis appropriate for gene therapy studies when animal models do not sufficiently mimic the human disease? If effective pharmacological approaches to treating CF exist, then gene therapy may prove to be unnecessary. Many "informed consent" documents are written to protect researchers, hospitals, companies, and universities from liability and may not be in the best interest of the patients who are required to sign them. And if gene therapy were available, it would not reverse existing lung problems, treatments would be costly, limited to few people, and would not last for very long periods of time.
The advanced media hype also offers false hope to those who suffer with the disease. Can genetic screening information get into the wrong hands? Are we really in control of our own genetic information and how it might be used? While the media has been playing up the promise of gene therapy, the reality is that the field is still in its infancy stage, the results to date are inconclusive, and funds dedicated to genetic research leave that much less available for clinical or applied research. While the field continues to grow, we must all continue to discuss the ethical and political issues surrounding its application.
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