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WASHINGTON INSIDER
Spring 2006
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At the end of 2005, the 109th Congress could boast of a great deal of maneuvering
on bioethics issues—but only one significant action, in the very last days of
the session. A federal bill to support public banking of umbilical cord blood stem
cells, held hostage to disagreements on embryonic stem cell research for many months,
was finally signed into law on December 20.
Congressional Impasse on Stem Cell/Cloning Bills
In the summer of 2005, Senate Majority Leader Bill Frist (R-TN) tried to
broker a deal allowing six or more bioethics bills to come up for debate and vote in
quick succession. The proposal was to bring up some bills favored by proponents of
cloning and embryonic stem cell research, some favored by opponents of these
practices, and some trying to chart a middle course, so every senator would have an
opportunity to stake out a position on the issues. But Senate Democrats (and some
Republicans) reportedly rejected the offer, and these bills remained at an impasse.
Any bill brought up in the U.S. Senate without such a "unanimous consent"
agreement faces two barriers: first, the possibility of a filibuster by opponents, requiring
a sixty-vote margin to invoke cloture (the process by which the Senate can vote to limit
debate) and proceed to a vote on the bill itself; second, the prospect that any controversial
bill can be attacked with numerous hostile amendments. Each amendment would
also have to be considered, since the Senate is not governed by the kinds of rules that
can limit debate and amendments on the floor of the House of Representatives. Factors
like these make it much easier to stall legislation than to pass it in the Senate.
A Victory for Patients on Cord Blood Stem Cells
One innocent victim of this impasse was the bill to promote banking of umbilical
cord blood stem cells, the Stem Cell Therapeutic and Research Act of 2005, sponsored
by Rep. Chris Smith (R-NJ) in the House (H.R. 2520) and Sen. Orrin Hatch (R-UT)
in the Senate (S. 1317). The House passed it almost unanimously, 431 to 1, on
May 24, the same day it approved H.R. 810, a bill to promote federally funded
embryonic stem cell research. Some Senate supporters of H.R. 810 rejected the
Senate majority leader's offer to bring up a number of bills relating to stem cell
research together, but also insisted that the cord blood bill should not be brought up
independently of H.R. 810. In essence, this unopposed bipartisan bill, cosponsored
by both supporters and opponents of embryonic stem cell research, was held hostage
to the debate on the far more problematic and controversial H.R. 810.
This situation was especially surreal because everyone involved knew that
H.R. 810 would not be enacted into law. President Bush had pledged to veto the bill,
and the House's approval fell fifty votes short of the margin needed to override that
veto. The result was a partisan game of "chicken": Democrats wanted to embarrass
the President by forcing him to cast his first-ever presidential veto against what they
perceive as a very popular bill; Republicans wanted to deny them that political
advantage; and the loser would be the party that flinched or wavered first.
In the end, what forced the Senate's hand was the charge that further delay
would do irreparable harm to suffering patients. In recent months, public recognition
of the benefits of cord blood stem cells has grown.1 Recent scientific literature has
documented the potential benefits of cord blood even for patients with severe neurological
problems: Hurler's syndrome,2 Krabbe's disease,3 and spinal
cord injury.4 In the Washington, D.C., area, the affiliates of two major television
networks featured human interest stories at the end of November about local families benefiting from
innovative cord blood stem cell treatments; the NBC broadcast described the common
practice of discarding umbilical cords after live births as "throwing away the future,"
and reported that a bill to alleviate this tragedy was pending in the Senate.5
At the same time, fearing public backlash against the hyped promises made for
embryonic stem cells, proponents of the research in recent months had been trying to
lower public expectations, conceding that treatments from these cells might take
years or even "decades" to materialize.6 Also garnering extensive media attention in
December was the South Korean cloning scandal, indicating that the only published
studies claiming the creation of embryonic stem cell lines from cloned human embryos
were tainted by deception, unethical practices to obtain women's eggs for the research,
and even falsified scientific data.7 This public "black eye" for embryonic stem cell
research could not have helped the credibility of those claiming that H.R. 810 offers
the royal road to cures.
Finally, Majority Leader Frist took the Senate floor on December 15 to ask for
unanimous consent that the cord blood banking bill be brought up and passed. Sen.
Tom Harkin, a cosponsor of the Senate version of H.R. 810, rose to speak against
bringing this measure up separately. In response, he was chided by Frist and other
Republicans for blocking expanded access to "a technology that is producing cures
and saving lives now," in the name of a proposal that could take decades to benefit
anyone.8 After further maneuvering, and a repeated promise from Sen. Frist that the
embryonic stem cell bill will be considered early in 2006, all holds were dropped and
the Stem Cell Therapeutic and Research Act was unanimously approved on
December 16.9 The House, required to take up the bill again because the Senate had
made technical amendments in committee, quickly approved the final version 413 to
0 on December 17.10
Signing the bill into law on December 20, surrounded by congressional sponsors
and by representatives of cord blood banks, President Bush said he was glad to be
signing legislation to promote science in an ethical manner. This writer, speaking for
the U.S. Conference of Catholic Bishops, said that "Congress and the President have
given a wonderful Christmas present to patients in need."11
Legislation Carried over into 2006
The bills considered as part of Senate Majority Leader Frist's proposed legislative
package this year, except for the cord blood bill, will carry over into 2006 and
may well be the subject of continued negotiations.12 They include:
- The Stem Cell Research Enhancement Act, sponsored by Sen. Arlen Specter
(R-PA) in the Senate (S. 471) and Rep. Mike Castle (R-DE) in the House
(H.R. 810). This bill would end the Bush administration's policy of funding
only research using stem cells that were derived from human embryos before
August 9, 2001. If the bill is passed, federal funds could be used to encourage
researchers to destroy new embryos for their stem cells, if the embryos are
considered "spare" by fertility clinics and "would otherwise be discarded."
H.R. 810 was approved by the House on May 24, by a vote of 238 to 194,
but President Bush has vowed to veto the bill, and the House's support falls
far short of the margin needed to override a veto.
- The Human Cloning Prohibition Act, sponsored by Sen. Sam Brownback
(R-KS) in the Senate (S. 658) and Rep. Dave Weldon (R-FL) in the House
(H.R. 1357). This is a genuine ban on the use of the "somatic cell nuclear
transfer" cloning technique to make human embryos for any purpose. It allows
the use of cloning techniques to produce plants, animals, or cells other
than human embryos. A similar bill (108th Congress, H.R. 534) was approved
by the House in 2003 by a vote of 241 to 155, but the issue has been at an
impasse in the Senate ever since. Supporters of "therapeutic cloning" (more
accurately known as human cloning for research purposes) would prefer to
vote on the Human Cloning Ban Act sponsored by Sen. Dianne Feinstein
(D-CA) in the Senate (S. 1520) and Rep. Mary Bono (R-CA) in the House
(H.R. 3932). It would ban only "implanting or attempting to implant the product
of nuclear transplantation into a uterus or the functional equivalent of a
uterus." The latter bill would allow the cloning of human embryos without
limit, but ban the later survival of these embryos by prohibiting the act of
placing them in the nurturing environment of the womb.
- The Human Chimera Prohibition Act, sponsored by Sen. Brownback (S. 1373).
This would ban the creation and use of certain human-animal chimeras (e.g.,
embryos created by uniting animal sperm with human egg or vice versa, or by
placing a human cell nucleus in an animal egg or vice versa). It would also forbid
the creation of "a nonhuman life form engineered such that it contains a human
brain or a brain derived wholly or predominantly from human neural tissues."
The timeliness of this proposal became apparent on December 13, when
researchers announced progress in getting human neural cells to grow in a mouse
brain as a model for studying human neurological diseases.13 The current research
stopped very far short of making a mouse with a predominantly human brain,
but it immediately raised questions as to how far researchers might go before
they risk creating and exploiting an animal with something comparable to a
human brain.14
- The Respect for Life Pluripotent Stem Cell Act, sponsored by Sen. Tom
Coburn (R-OK) in the Senate (S. 1557) and Rep. Roscoe Bartlett (R-MD) in
the House (H.R. 3144). This would encourage federal funding of "research in
the derivation and use of human pluripotent stem cells by means that do not
harm human embryos." This could include investigating the versatility of adult
and cord blood stem cells, experiments in dedifferentiating adult cells to a
more "pluripotent" state, and efforts to obtain embryonic-like stem cells without
creating or harming live human embryos.
Pro-life groups have generally welcomed the effort to explore options that avoid
harming embryos, but are also cautious about some of the proposed avenues.15 The
complexity of this issue was illustrated by letters published October 16 in the online
edition of Nature, in which two different research teams claimed to have made
progress in obtaining embryonic stem cells without destroying embryos. One team,
led by Dr. Rudolf Jaenisch of MIT, produced mouse embryos that were engineered
to lack a gene necessary for full embryonic development, known as Cdx2; they said
they had grown the resulting entity to a stage where embryonic stem cells could be
obtained.16 The question raised here is whether "knocking out" this one gene produces
an entity that is not an embryo, or is simply a very damaged and short-lived embryo
that cannot develop past a certain point. Another team, led by Dr. Robert Lanza of
Advanced Cell Technology, said it had obtained viable embryonic stem cells by
performing a biopsy on very early mouse embryos without visibly harming them.17
Here the argument is that a child conceived by in vitro fertilization could have stem
cells picked off at a very early stage of development, for research and for creating
that particular child's own "repair kit" for the future. But the biopsy technique used
to obtain the cells poses uncertain risks to the embryo, and is generally now used to
harvest cells for genetic analysis (with subsequent discarding of any embryo found to
have a genetic defect). Making stem cell research dependent on this problematic
technique for eugenic selection, and on IVF itself, with its risks and ethical problems,
does not seem a promising way to resolve ethical concerns.
Other bills on this issue have also been discussed, but not yet introduced. Some
Senate Republicans, such as Kay Bailey Hutchison (R-TX) and Norm Coleman
(R-MN), want to reverse President Bush's policy of using only embryonic stem cells
obtained from embryos before August 9, 2001, but do not want to go as far as
H.R. 810. Other senators have shown an interest in slightly different bills to promote
alternative ways to obtain pluripotent stem cells. We can be sure that this debate will
continue into 2006 in all its bewildering complexity.18
President's Council on Bioethics: Taking Care
As reported in the Winter 2005 Washington Insider, Dr. Leon Kass has stepped
down as Chairman of the President's Council on Bioethics; he will remain on the
council, and is succeeded as chairman by Dr. Edmund Pellegrino. The final council
report developed under Dr. Kass's leadership, Taking Care: Ethical Caregiving in
our Aging Society, was published in October 2005.19
End-of-life issues have long been a mainstay of bioethics debate. But the new
council report deserves careful attention from ethicists, lawmakers, and others because
of its fresh perspective.
First, the authors recognize that much medical and ethical attention has been
lavished on the plight of terminally ill patients and their need for palliative care, due in
part to the societal debate on physician-assisted suicide. Far less attention has been
devoted to the more daunting challenge of an aging population that includes millions
of long-term patients, who may live for many years in declining health and often with
various degrees of dementia. This can involve far more complex judgments about
life-sustaining treatment, and significantly more demanding psychological and financial
commitments simply to provide care for patients we cannot cure.
Second, the authors recognize that in addressing the needs of patients with
dementia, the "personal autonomy" model favored by many modern bioethicists is
of very limited use. These patients are increasingly unable to make informed decisions
for themselves, and models of "substituted judgment" create the illusion of
autonomy while actually imposing the views of others. What is needed is a consensus,
or at least some attempt at consensus, on a basic level of care we owe to all
helpless patients due to their perduring human dignity.
Third, the council carefully explains why one proposed solution—encouraging
all patients while they are competent to sign advance directives such as "living wills"—
has severe limitations. Taking Care contains the most thoughtful and extensive critique
of the craze for living wills this writer has seen in many years. That craze has
only intensified in the wake of the highly publicized Terri Schindler Schiavo tubefeeding
case; all involved in promoting living wills as the obvious solution to such
problems should read Chapter 2 of this report.
The report's final recommendations are necessarily rather general. The council
firmly rejects legalization of euthanasia and assisted suicide as solutions to the plight
of these patients. (On this issue one member, Janet Rowley, M.D., filed a dissenting
statement, which calls the majority view "draconian" and rails against the "greedy"
seniors who are using up more than their fair share of social resources.) The report
promotes a model of "best care," whereby every human person will receive the care
due to his or her human dignity but will not have needlessly burdensome lifeprolonging
care imposed on him or her. (While most council members and staff are
not Catholic, Catholic ethicists will be on familiar ground here.) Finally, the council
recommends the establishment of a "Presidential Commission on Aging, Dementia,
and Long-Term Care" to discuss how the health-care system must change to accommodate
the urgent needs of our increasingly aging population.
Whether these worthwhile recommendations will be taken up by policy makers
in Washington and around the country as a guide to action remains to be seen. "A
mature and caring nation," concludes the report, "concerned about staying human in
a technological age, will not shy away from its responsibilities. If asked, ‘Who cares?'
the answer must be, ‘We do.'"20
Are we indeed such a nation? And do we care enough to meet these needs?
Richard M. Doerflinger
Deputy Director
Secretariat for Pro-Life Activities
United States Conference of Catholic Bishops
Washington, D.C.
Notes
1
See Ronald Kotulak, "Medical Hope in Umbilical Cord Blood: Researchers Find
Its Healing Powers May Provide Cures for Many Deadly Maladies," Chicago Tribune,
October 23, 2005, final edition, 26, http:/ /www.stemcellnews.com/articles/stem-cellsmedical-
hope-in-umbilical-cord-blood.htm.
2
Susan L. Staba et al., "Cord-Blood Transplants from Unrelated Donors in Patients
with Hurler's Syndrome," New England Journal of Medicine 350.19 (May 6, 2004):
1960–1969.
3
Maria L. Escolar et al., "Transplantation of Umbilical-Cord Blood in Babies with
Infantile Krabbe's Disease," New England Journal of Medicine 352.20 (May 19, 2005):
2069–2081.
4
K. S. Kang et al., "A 37-Year-Old Spinal Cord–Injured Female Patient, Transplanted
of Multipotent Stem Cells from Human UC Blood, with Improved Sensory Perception and
Mobility, Both Functionally andMorphologically: A Case Study," Cytotherapy 7.4 (2005):
368–373.
5
Kathy Fowler, "Stem Cell Surgery in S. Korea," ABC 7 Medical, November 30,
2005, http://www.wjla.com/news/stories/1105/281912.html; "Cord Blood Stem Cells Key
to Saving Lives," NBC 4, November 30, 2005, http://www.nbc4.com/health/5438374/
detail.html.
6
For a sampling of such recent statements, see Do No Harm: The Coalition of
Americans for Research Ethics, "The ‘Political Science' of Stem Cells, Lesson 11: Not
Months or Days, But Decades," December 5, 2005, http://www.stemcellresearch.org/polisci/lesson11.pdf.
7
See Richard M. Doerflinger, "Cloning Chaos," National Review Online, December
13, 2005, http://www.nationalreview.com/comment/doerflinger200512130824.asp; Erika
Check, "Where Now for Stem Cell Cloners?" Nature, News (December 20, 2005),
http:/ /www.nature.com/news/2005/051219/full/4381058a.html.
8
Senators Frist, Harkin, Brownback, Enzi and Hatch, 109th Cong., 1st sess., Congressional
Record 151.161 (December 15, 2005): S13636–S13640; the quotation is from
Senator Frist, at S13636.
9
Senator Frist, Congressional Record 151.162 (December 16, 2005): S13930–S13931.
10
Congressional Record 151.163 (December 17, 2005): H12063–H12072 (Floor
debate and full text of legislation) and H12142–H12143 (House vote).
11
USCCB Office of Media Relations, "USCCB Official Hails Enactment of Cord
Blood Stem Cell Legislation," December 20, 2005; http://www.usccb.org/comm/archives/
2005/05-290.shtml. The full text of a July 11, 2005, letter to the Senate from Cardinal
William Keeler, Chairman of the USCCB Committee for Pro-Life Activities, urging Senate
approval of the cord blood bill, is available at http://www.usccb.org/prolife/issues/
bioethic/stemcell/keelercord.pdf.
12
The bills described here that have not been enacted will remain active, under these
bill numbers, as the current Congress has only reached the middle of its two-year span;
2006 is the second session of the 109th Congress. The text and legislative history of each
bill discussed here can be obtained from the congressional Web site THOMAS, at http://
thomas.loc.gov.
13
Alysson R. Muotri et al., "Development of Functional Human Embryonic Stem
Cell-Derived Neurons in Mouse Brain," Proceedings of the National Academy of Sciences
102.51 (December 20, 2005): 18644–18648; published online December 13.
14
See Paul Elias, "Scientists Create Mice with Human Brain Cells," Associated Press,
December 12, 2005, http://msnbc.msn.com/id/10441350/.
15
For example, see the Colloquy discussion in National Catholic Bioethics Quarterly
5.1 (Spring 2005): 9–22.
16
Alexander Meissner and Rudolf Jaenisch, "Generation of Nuclear Transfer-Derived
Pluripotent ES Cells from Cloned Cdx2-Deficient Blastocysts," Nature 439.7073
(January 12, 2006): 212–215.
17
Young Chung et al., "Embryonic and Extraembryonic Stem Cell Lines Derived
from Single Mouse Blastomeres," Nature 439.7073 (January 12, 2006): 216–219.
18
For an astute and challenging analysis of the controversy from a secular viewpoint,
see William Saletan, "Stem-Cell Shakeup," Slate, October 20, 2005, http://www.slate.com/
id/2128306/.
19
The President's Council on Bioethics, Taking Care: Ethical Caregiving in Our
Aging Society (Washington, DC: Government Printing Office, 2005), available at
http://www.bioethics.gov/reports/taking_care/taking_care.pdf.
20
Ibid., 222.
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