June 13, 2006

Letter: The cost of cures  

MetroWest Daily News – Julia Spitz raises valid concerns about the privacy of DNA databases in her column ("What will we pay for kids' DNA?" June 8). But, as bioethicist Arthur Caplan pointed out, there are ways to protect privacy. The real question is: What are we willing to do to develop treatments that may save the lives of children (and their parents for that matter)? Most of us would say those treatments are priceless.

Everyone involved in medical research needs to understand more deeply the value of human biological materials in research and the rules and responsibilities that should govern their use. For that reason, the non-profit FasterCures has launched "BioBank Central," (www.biobankcentral.org) a Web site devoted to educating patients, volunteers, doctors, researchers and the general public about the ethical, legal and scientific bases for obtaining and using such materials to accelerate research into cures for diseases.

BioBank Central accents the role patients/volunteers have in furthering medical research and highlights the respect and responsibilities they are owed by the medical research establishment that depends on their voluntary participation.

What are we willing to do to cure diseases? Until we give patients complete information about their opportunities to participate in research, especially in areas as personal as DNA and tissue collection, we will never know.

-Greg Simon

President, FasterCures / The Center for Accelerating Medical Solutions,
Washington, D.C

To view the article Greg Simon is responding to, click here. (subscription required)