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I am Richard M. Doerflinger, Deputy Director of the Secretariat for
Pro-Life Activities at the U.S. Conference of Catholic Bishops in
Washington D.C. I also serve as Adjunct Fellow in Bioethics and Public
Policy at the National Catholic Bioethics Center in Boston. I am a
Maryland resident, having lived here (in Mount Rainier, then in Silver
Spring) for 22 years.
I have been asked by the Maryland Catholic Conference to present
testimony today on House Bill 482, on "Stem Cell Research." I am familiar
with the bill because similar language is being marketed simultaneously in
various states by certain elements of the biotechnology industry.
Regarding any bill it is a good idea to ask why it is needed. What does
it approve or legalize that is not already being done legally without
the bill's enactment? After all, in American law everything is allowed
unless it is expressly prohibited. So what is currently illegal, or at
least legally or morally controversial, that needs to receive this
legislative endorsement?
What HB 482 is not needed for
This bill is certainly not needed in order to allow adult stem cell
research, which is completely legal and eligible for federal funding. Nor
is it needed in order to allow the use of fetal tissue (including
"embryonic germ cells" harvested from unborn children who are aborted at
around 8 weeks of gestation). Such research is not only legal, but is
currently conducted at Johns Hopkins University and (with certain
conditions) is also eligible for federal funding. Nor is it even needed in
order to allow use of embryonic stem cells obtained by destroying
one-week-old human embryos who are considered to be "in excess of clinical
need" donated at fertility clinics. Such research is legal in Maryland and
most other states, and even some aspects of this research (i.e., research
on stem cell lines that were derived from embryos before August 9, 2001)
are eligible for federal funding. And the bill is not needed to set legal
limits on the selling of "embryonic or cadaveric fetal tissue," since
exactly these same limits have already been part of federal law for
a decade (and incidentally, have shown themselves to be inadequate and
ineffectual). See 42 USC 289g-2.
What HB 482 approves
The central purpose of this bill, then, must be to approve that part of
"stem cell research" that is either illegal, or so widely condemned that
researchers might fear to pursue it without the legislature's seal of
approval. If the legislature approves this bill, it will do so to ensure
that the following is conducted in the state of Maryland:
1. Research in which human embryos are specially created by
in vitro fertilization solely in order to be destroyed for research
purposes. A program of this kind was begun at a fertility clinic in
Norfolk, Virginia in 2001, but was discontinued after it provoked nearly
universal moral outrage from lawmakers and others. Even to many people who
accept the idea of research on already existing "spare" embryos who may
otherwise be discarded, the idea of creating early human lives solely to
destroy them takes a giant step toward treating life as a mere instrument.
A Maryland researcher may well want to have the advance approval of the
state legislature before beginning such a project here.
2. Fetal tissue research that violates the ethical standards
required for federally funded research. If it did not go beyond the
federal funding standards it would have no need of official encouragement
from the state. This could include projects in which:
- Researchers desiring fetal tissue perform the abortions themselves,
or introduce changes in the timing or method of abortion to produce more
usable tissue;
- Women are persuaded to have abortions precisely in order to provide
transplant tissue for themselves or their loved ones.
- Women are encouraged to become pregnant so that such abortions can
be performed in order to obtain fetal tissue for themselves or their
loved ones.
3. Research using "somatic cell nuclear transplantation" (cloning)
to produce human embryos and fetuses and born children as
sources of cells and tissues. This sounds like a nightmarish science
fiction scenario, but it is exactly what the bill says: "The General
Assembly declares that it is the policy of the state that research
involving the derivation and use of human embryonic stem cells, human
embryonic germ cells, and human adult stem cells from any source,
including somatic cell nuclear transplantation, shall be allowed." The
idea of using cloning to mass-produce and harvest human embryos as nothing
more than agricultural products is horrific enough (though it is not
currently illegal in the state of Maryland). The idea of extending this
into the "farming" of fetal and newborn humans for spare parts, however,
is the research area that most needs legislative endorsement if scientists
are to have the nerve to pursue it.
Technically such research does not seem to be illegal now - that is,
Maryland has no law against any kind of human cloning, and effectively no
limits on abortion. And as long as parental consent is obtained, and the
cell harvesting is not harmful to the child, there is no law against
cloning and delivering a child solely to obtain his or her bone marrow
stem cells to treat the adult whose genetic "copy" the child was created
to be. But understandably, researchers will not pursue these avenues
without official approval, because almost everyone on earth would see them
as morally monstrous.
Why bills like HB 482 are being recommended to state legislatures
The language of this bill is no accident, at least from the viewpoint
of outside groups supporting it.. A similar bill (SB 1909, AB 2840) was
considered in New Jersey this year - it banned "human cloning," but then
said that one is not guilty of "cloning" unless one develops the cloned
human through the embryonic, fetal and newborn stages to
produce a human "individual." The bill actually was approved by one
chamber of the legislature, then ultimately withdrawn when legislators
finally realized what it does. In New York a bill (A. 6249) has been
introduced to allow human cloning, and the gestating of cloned embryos
through the fetal stage, as long as this is not done for the purpose of
producing a live birth.
Why is this being proposed now? It is done because certain interests in
the biotechnology industry, fixated on the pursuit of human cloning for
biomedical research, are afraid that their original model for "therapeutic
cloning" may not work. The original idea was to use cloning to produce
one-week-old embryos, who would then be destroyed for their "embryonic
stem cells" which will be a perfect genetic match to the patient who
donated genetic material for the cloning procedure. But now problems have
emerged.
It turns out that "therapeutic cloning" is not working well, even in
animals. Embryonic stem cells are too difficult to maintain, too
uncontrollable, too likely to turn into lethal tumors in animals' bodies.
There are only two animal studies suggesting therapeutic benefits from
cells that originated from cloning. One, designed to provide new kidney
tissue, required gestating the cloned cow embryo in a uterus and then
aborting it to obtain fetal kidney tissue (Lanza et al., 20
Nature Biotechnology 689-96, July 2002). The other, designed to
correct a genetically-based immune deficiency, required taking the new
mouse (produced by cloning and genetic modification) to the newborn
stage and harvesting its adult stem cells to treat the original
mouse (Rideout et al., 109 Cell 17-27, April 5, 2002). These new state
bills on cloning are designed to keep researchers' options open, to make
it possible to transfer these animal models to human use.
This means, of course, that in approving this bill Maryland would be
marking out a path that is rejected by the vast majority of Americans, and
apparently by every single member of Congress. For there is no member of
Congress who supports allowing cloned embryos to be placed in a womb and
gestated to the fetal or newborn stage (called by some "reproductive
cloning"). Some members of Congress, including some of the Maryland
congressional delegation, say they want to allow use of cloning to make
embryos who will be destroyed for their stem cells at an early stage in
the laboratory - but the introduction of bills like these illustrates that
the research community is already abandoning that stance and is moving on
to the next step.
Ethical limits?
Doesn't the bill prevent these horrors by its call for attention to
ethical limits? No, it does not. There is vague talk of "consideration of
the ethical concerns regarding this research," but no actual limits.
Surely no court would find that the legislature, having officially
approved cloning to produce embryos, fetuses and newborns, intends to
have this clear mandate overridden by someone's "ethical concerns" after
the fact. And the bill speaks of approval by an Institutional Review
Board, but provides no standards by which the IRB could judge an
experiment. Usually, in approving even privately funded research, IRBs
follow the standards for federally funded research by default. That cannot
be done here, because research that involves doing abortions to obtain
fetal tissue, destroying embryos for their stem cells, and performing
human cloning is completely ineligible for federal funding. So there are
no standards. The IRBs will have to fly us into the Brave New World of
cloning and body farming by the seat of their pants.
In so doing, the IRBs would be able to glean the following ethical
guidance from the language of the bill itself:
- "Stem cell research could lead to unprecedented treatments and
potential cures" for a wide array of diseases. (Incidentally, the truth
of this statement is highly questionable in the case of embryonic stem
cell research and "therapeutic cloning," neither of which is anywhere
near providing any treatment for humans; the statement about producing
cures would be true of many aspects of adult stem cell research, but
that is already legal and federally funded and in no need of help from
this bill.)
- "The United States and the State of Maryland have historically
fostered open scientific inquiry." (This is a half-truth. Our federal
and state governments have insisted that scientific inquiry not be
pursued if it will mistreat human subjects. "Historically," there have
been lapses in which the lust for medical progress was allowed to
outweigh ethical concerns, but these are the darkest pages of our
national history. Maryland, in fact, has been in the forefront of states
that insist on clear ethical and legal limits to medical research, and
its courts have found that researchers can be sued for negligence when
they give insufficient attention to the safety and well-being of
children who are too young to consent to research. See Grimes v.
Kennedy Krieger Institute, 782 A.2d 807 (Md. 2001). Incidentally,
Maryland's highest court found in this decision that the IRB at Johns
Hopkins University had "abdicated" its responsibility to protect
children from research risks, and had shown that it "was willing to aid
researchers in getting around federal regulations designed to protect
children used as subjects in nontherapeutic research." No one who has
read this decision will want to entrust all ethically controversial
research decisions solely to IRBs).
- Maryland's biotechnology industry is a gold mine for the state, and
this situation would be endangered by "limitations" on stem cell
research.
- Therefore, "public policy on stem cell research must balance
ethical and medical considerations." This statement of principle sounds
nice and moderate, until one gives it a moment's thought. Since the
Nuremberg Code, society has insisted that the lure of medical progress
must never be misused to outweigh ethics: "Concern for the
interests of the subject must always prevail over the interest of
science and society" (World Medical Association, Declaration of Helsinki
(1975), I.5). Or as a survivor of Dr. Josef Mengele's notorious "twin"
experiments has said: "Human dignity and human life are more important
than any advance in science or medicine" (Eva Mozes-Kor, quoted in A.
Caplan, When Medicine Went Mad (1992), p. 7).
If researchers are to "balance" ethics and medicine, that means one can
pursue even research that one knows is unethical -- if the
potential medical benefit is great enough. The researchers who conducted
the Tuskegee syphilis experiment on African-American men, who deliberately
infected retarded children with the hepatitis virus at the Willowbrook
home, who approved the Cold War radiation experiments on unsuspecting
American civilians, who allowed children to be exposed to lead poisoning
in the research condemned two years ago by the Maryland Court of Appeals -
these researchers "balanced" ethics and progress, and "progress" won. I
urge the state of Maryland not to pursue such "balance."
Finally, a word about the bill's attempt to ban the selling of fetal
organs and tissues. I'm sure this part of the bill is well-meant, but we
know in advance it will be ineffectual. It tracks the language of a
federal ban that has been in place since 1993: Such tissues and organs may
not be given for "valuable consideration," but a service fee for obtaining
the tissue, shipping and handling, etc. is allowed. Under this language,
fetal tissue distributors have been able to advertise the availability of
various fetal organs and tissues for pay, publish "price lists" (see
attached), and in brief do everything involved in selling body parts - as
long as they call it a "service fee." If Maryland wants to prepare
legislation to prevent such abuse, that may be a laudable idea - but we
know this language is not the way to do it.
Conclusion
My testimony will sound largely negative - and it is negative regarding
this bill, which is a moral and medical horror. But I want to end with a
message of hope. In recent years, enormously promising new treatments have
begun to emerge from medical research. In clinical trials, patients have
been successfully treated for Parkinson's disease, sickle-cell anemia,
thalassemia, Type I diabetes, severe combined immune deficiency, corneal
damage, heart disease, bone and cartilage injury, and so on. Early trials
in treating patients with chronic spinal cord injury have shown progress
in regaining sensation and movement. All these trials used adult
stem cells, other adult cells obtained ethically, or sources such as
umbilical cord blood. Some of this progress has even come from researchers
in Maryland. No treatment now in trials, or on the horizon, comes from
embryonic stem cells or from so-called "therapeutic cloning." By focusing
on these most controversial and most speculative approaches, our resources
and attention may well be diverted away from the promising treatments now
on the brink of helping millions of patients - and we will actually slow
down the medical progress that patients deserve.
We need not set aside human dignity, or "balance" ethics against the
desire for progress - a balancing act in which ethics so often seems to
lose. We can fully respect and promote sound ethics and promising medicine
together, for there is no conflict between them. I urge the committee to
begin this journey to ethically responsible medical progress by defeating
HB 482.
NOTE: As presented to the committee this testimony included an
attachment, a "Fee for Services Schedule" distributed in 1999 by a tissue
procurement company in Illinois called Opening Lines. The schedule lists a
long series of fetal organs of various types and stages, with prices
(e.g., "Eyes (>8 weeks) – 40% discount for single eye - $50," "Spinal
Column - $150," etc.). Inserted at the bottom of the page was this comment
by the witness:
This price list for fetal body parts was widely circulated by a tissue
procurement company, despite federal law (42 USC 289g-2) supposedly
forbidding the sale of human fetal tissue. The company evaded the law by
presenting this list as a "fee for services schedule," taking advantage of
the law's provision allowing "reasonable payments associated with the
transportation, implantation, processing, preservation, quality control,
or storage of human fetal tissue." Maryland's HB 482 contains the same
loophole. |
