Patient Groups Reject Kass Commission Call for Moratorium on Therapeutic Cloning: Moratorium Equals Ban on Life-Saving Research

7/11/2002

From: Julie Kimbrough of the Coalition for the Advancement of Medical Research, 646-734-6091, juliekimbrough@earthlink.net

WASHINGTON, July 11 -- The Coalition for the Advancement of Medical Research (CAMR) reacted today to the recommendation of the President's Council on Bioethics for a four-year "moratorium" on therapeutic cloning (also known as somatic cell nuclear transfer, or SCNT). CAMR, which opposes a ban on therapeutic cloning, has been leading the charge to urge Senators to support this area of life-saving medical research.

"The Council's recommendation is a blow to the millions of Americans fighting life-threatening medical conditions, because a moratorium has the same effect as a ban on life-saving research," said Michael Manganiello, president of CAMR. "Unfortunately, the Council has chosen to join the opponents of therapeutic cloning who are calling for a moratorium. A moratorium stigmatizes vital research and is extremely hard to lift. Most importantly, it puts on hold medical breakthroughs that seriously ill people must have access to."

"When the President's Council on Bioethics decided to exclude from their committee those most affected by medical research -- patients and their families -- they laid the groundwork for this terrible decision," said Richard Arvedon, the father of a five-year-old daughter with Type 1 diabetes. "If the Council had included even one single advocacy group representing people with diabetes, spinal cord injury, Parkinson's, Alzheimer's, or other incurable diseases, they might have realized that a moratorium has the same impact as a ban."

On Friday, July 12, Dr. Maxine Singer, former chief of the National Cancer Institute's Laboratory of Biochemistry and current president of the Carnegie Institution, will present the Council on Bioethics with a petition against a moratorium and a ban on SCNT. The petition is signed by 2,000 teachers and scientists in medical schools and university science departments across the country. Signers come from all 50 states and include eight Nobel laureates.

"The petition signals that a large group of informed medical and scientific opinion in this country does not agree with the Council's call for a moratorium," said Singer. "This group's opposition to criminalizing therapeutic cloning and imposing a moratorium on it is consistent with the recommendations of the report Human Reproductive Cloning prepared by a distinguished panel of the National Academies earlier this year. The petition amounts to an urgent request to allow this promising research to go forward in the interest of millions who are afflicted with severe childhood and adult illnesses."

"My mother was afflicted with Alzheimer's disease for about five years before she died," said Raymond Barglow, a CAMR volunteer and one of the lead organizers of the petition. "It was difficult to witness my mother's gradual loss of memory and thought capacity, until she could no longer recognize even members of her own immediate family. We were baffled by a disease that modern medicine can, at this time, do very little to remedy. I'd like to change that." Barglow and a group of university student volunteers consulted with physicians, medical school educators and scientists to organize a petition campaign in support of therapeutic cloning research. Their grassroots effort collected the 2,000 signatures, and they continue to receive new signatures every day.

The full text of the petition and a complete listing of signers (organizational affiliations are provided for identification purposes only) can be found at http://www.multiversity.org/sigpage-new-petition.htm. Many of the signers also included public comments, including:

"I speak from the standpoint of an academic neurologist involved in clinical research and the care of patients with neurodegenerative disorders such as Parkinson's disease, Alzheimer's disease and various others that affect millions of people in the U.S. and around the world. There is no cure for these devastating conditions that are characterized by slow loss of brain cells and an undignifying death. Therapeutic cloning is an option that may change the lives of these patients and restore brain function. It is distinct from cloning humans for reproductive purposes and researchers in this field need to be given the freedom to explore the area. I support this entirely. The future of scientific research should not be compromised by the misconceptions of a few." -- Kersi Bharucha M.D., assistant professor, Department of Neurology, University of Oklahoma Health Sciences Center, Oklahoma City, Okla.

"I am a scientist who does no cloning research, a practicing Christian, and a parent of a child who died with a serious genetic disease with no cure. I also serve as Chair of the University of Minnesota Institutional Biosafety Committee which reviews recombinant DNA research and work with biotoxins and pathogenic organisms. This has given me a front row seat to see both the commitment of researchers to find cures for the horrible diseases among us and a chance to see the value of safely regulating, rather than stopping, new research techniques we have some concerns about. Please fight to allow research with stem cells so that these researchers can continue to make the progress that we all hope and pray for in the battle against these diseases." -- Louise Hawley, Ph.D, assistant professor, Department of Medical Microbiology and Immunology, University of Minnesota School of Medicine and Chair of University of Minnesota Institutional Biosafety Committee, Duluth, Minn.

"Without therapeutic cloning, future research using human embryonic stem cells would be significantly hampered...To ban therapeutic cloning would not serve the interests of the U.S. taxpayers, nor would it stop the research. It would merely encourage the best of our scientists in the field to either stop doing it here in the U.S. or to do it in countries supporting this research. The self-imposed embargo of the most promising lines of research does not reflect the best judgment of this great country, it only represents the ideology and religious belief of the misinformed and the predetermined." -- Jian Feng, Ph.D., assistant professor in the Department of Physiology and Biophysics, SUNY-Buffalo, Buffalo, N.Y.

------ The Coalition for the Advancement of Medical Research (CAMR), is comprised of nationally-recognized patient organizations, universities, scientific societies, foundations, and individuals with life-threatening illnesses and disorders, advocating for the advancement of breakthrough research and technologies in regenerative medicine -- including stem cell research and somatic cell nuclear transfer -- in order to cure disease and alleviate suffering. For more information on CAMR, visit the Web site: http://www.camradvocacy.org.