The Voice from Washington

By John Rogers

Spotlight On Therapeutic Cloning

Last spring, the U.S. Senate engaged in a heated, behind the scenes debate over the issue of cloning in medical research. The issue: whether to approve research involving "somatic cell nuclear transfer" (SCNT a.k.a. therapeutic cloning), a process in which the nucleus of an unfertilized egg is replaced with a patient's own cells and then the new cell is used to rebuild a part of the damaged body, such as the brain cells that are lost in Parkinson's.

In some ways the new debate is very similar to the exchanges last summer on the subject of research on stem cells derived from human embryos. This process ended in a compromise edict by President Bush that restricted the use of federal research funds to tissue derived from an estimated 64 existing cell lines. But in other respects, the issues are different — and, in the view of many Parkinson's observers, should be politically more palatable to a wider range of groups.

First, the eggs used in SCNT are unfertilized, and no sperm is used in the procedure. Secondly, since the new nucleus of the cells is derived from the patient's own body, there is no possibility of it being rejected or destroyed (as often happens when cells are transferred from another organism). In effect, SCNT could allow patients to be cured of a condition such as Parkinson's by using their own DNA.

Despite these differences with last year's debate, the battle is no less intense. Legislation introduced by Senators Sam Brownback (R-KS) and Mary Landrieu (D-LA) would ban all forms of cloning, including SCNT. If approved, the Brownback bill would have devastating results and cut off hope for millions of Americans with life-threatening diseases.

On the other side, a bill co-sponsored by Senators Arlen Specter (R-PA), Edward M. Kennedy (D-MA), Dianne Feinstein (D-CA) and Orrin Hatch (R-UT) would ensure that the use of therapeutic cloning for medical research is allowed to continue. This bill would establish rigorous oversight of the research, including review by an ethics board. Furthermore, it would explicitly ban human reproductive cloning (that is, cloning designed to create a whole human being, which virtually everyone is against) and impose severe penalties — including jail time and fines of up to millions of dollars — on scientists who pursue it.

At this writing (mid-July), the legislation appears to be stalled, but there are signs the issue may still come to a vote this fall. In June, the Senate blocked Senator Brownback's attempt to add his legislation as an amendment to an unrelated bill. While the issue has been sidelined temporarily, it is sure to resurface as passions on both sides of the issue continue to burn. One question will be the impact of the new report from President Bush's Committee on Bioethics, a somewhat conservative panel under the direction of Dr. Leon Kass, that came out on July 11 with a recommendation for a four-year moratorium on SCNT. While the Parkinson's community is united in its rejection of the recommendation, observers are encouraged by the closeness of the vote (just 10–7) and the fact that the recommendation was for a moratorium rather than an outright ban.

Representing the Parkinson's Community: the Roles of PAN and CAMR
The Parkinson's Action Network is playing a leading role, in collaboration with the Committee for the Advancement of Medical Research (CAMR), in representing the Parkinson's community in support of the bill co-sponsored by Senators Specter, Kennedy, Feinstein and Hatch. CAMR is a coalition that brings together a wide range of disease communities whose members could benefit in the long run from the fruits of stem-cell research. Both Elisabeth Bresee Brittin, executive director of the Parkinson's Action Network, and I serve on CAMR's Board of Directors.

In March, Ms. Brittin spoke on behalf of the Parkinson's community at a Capitol Hill news conference held to highlight the potential of somatic cell nuclear transfer for patients and their families. She joined Christopher Reeve, Chairman of the Christopher Reeve Paralysis Foundation; Dr. Paul Berg, Cahill Professor of Cancer Research and Biochemistry, Emeritus, Stanford University School of Medicine; Senator Kennedy; Senator Feinstein; Senator Specter; members of CAMR and other patient advocates. Ms. Brittin made it clear that PAN "steadfastly opposes human reproductive cloning" and went on to say, "We agree with the overwhelming view of scientists, members of Congress and the majority of Americans, that it should never be pursued." She joined the other participants in urging Congress to allow scientists to pursue all medical options and not to close the door on new and promising technologies such as SCNT.

Looking Ahead
In the meantime, the Parkinson's community will continue to work with CAMR — which is composed of more than 70 universities, scientific and academic societies, patients' organizations, and other groups — to ensure that SCNT remains a legal and viable form of scientific research.

This coalition has been tremendously effective in unifying supporters of both SCNT and embryonic stem-cell research. CAMR is recognized nationally by members of Congress, the media and others as the leader on issues of regenerative medical research. The success CAMR has enjoyed demonstrates the value of speaking with one voice. Not only is it louder, but it is clearer as well.

More background on the Washington, DC efforts on behalf of the Parkinson's community can be found on PAN's web site www.parkinsonsaction.org. More information on CAMR and therapeutic cloning information can be found on the web at www.camradvocacy.org.

John Rogers is the Education and Advocacy Director of the Parkinson's Action Network, the Washington-based advocacy arm of the Parkinson's Community.