Yesterday’s ruling by the U.S. Supreme Court that human genes are a product of nature and cannot be patented is being hailed by many as a victory for patients and medical research.
The ruling is consistent with a longstanding NORD advocacy position, first articulated in a policy paper more than 10 years ago in which NORD stated that:
NORD joins NIH Director Francis Collins, MD, PhD, and others in viewing yesterday’s Supreme Court decision as a victory for patients, for medical researchers, and for the rare disease community.
NORD’s full policy statement on this topic, originally published in 2000 and reflected in other publications since then, is as follows:
Gene Patenting: NORD Policy Position
On June 26, 2000, the publicly financed Human Genome Project, along with the privately financed company Celera Genomics, jointly announced that they had successfully mapped more than 95 percent of the human genetic code. This new knowledge is expected to lead to development of new treatments and cures for numerous health conditions, especially genetic diseases.
In the past, the United States Patent and Trademark Office (PTO) has allowed scientists and corporations to patent genes and gene sequences before any uses were known. NORD feels that exclusive patents on genes and sequences will limit scientific research and the development of needed pharmaceuticals, biologics and other therapies for millions of people throughout the world. Patent holders are able to prevent or delay research on a gene, charge fees to scientists for access to a gene, and force researchers to sign confidentiality agreements that prohibit publication of their research results. NORD believes the ability to prevent research on any disease is unethical, especially when the commercial use of a gene is not yet known.
Whom We Represent:
NORD is a federation of not-for-profit health organizations and individuals and medical professionals serving people with rare diseases. Most rare disorders are genetic. As a voluntary health agency dedicated to helping people with rare disorders, NORD works to ensure that biomedical research will not be hampered or delayed, and that the fruits of genome discoveries will be made available to patients who need them.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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