Stem Cell Debate

Rcjohnsen rcjohnsen at
Sat Mar 4 16:33:00 EST 2000

Patients' Voices: The Powerful Sound in the Stem Cell Debate 

Daniel Perry 

    Millions of patients may benefit from the applications of stem cell
research, although there is disagreement about whether public funds should be
used to develop the science. Patients have been key to winning political
support. Acting as advocates, they have contended that public investment will
speed the research and bring accountability to biomedical technology. A
political dispute about the new research, which holds the potential for cures
to devastating diseases and to foster healthy aging, shows the need to respect
public sensibilities and to court public approval, as well as the importance of
involving patients in debates where the methods of biomedical discoveries and
ethical beliefs collide.  

Alliance for Aging Research, 2021 K Street, NW, Suite 305, Washington, DC
20006, USA. 

    The achievement of isolating and growing cultures of self-renewing human
pluripotent stem cells has set off waves of optimism among both researchers and
the lay public (1). The promise is tangible for effective new approaches to
incurable diseases and underlying biological processes (2). As shown in Table
1, over 100 million Americans suffer from illnesses that might be alleviated by
cell transplantation technologies that use pluripotent stem cells. Yet some
representatives in Congress and some of the lay public, as well as religious
groups such as the National Conference of Catholic Bishops, oppose putting
public funds behind the technology. They say that stem cell research belongs
under a federal ban that currently prohibits federal funding of embryo research

Table 1. Persons in the United States affected by diseases that may be helped
by human pluripotent stem cell research. Data are from the Patients' Coalition
for Urgent Research, Washington, DC. 


Condition 	Number of persons affected

Cardiovascular diseases 		58 million 
Autoimmune diseases 			30 million 
Diabetes 						16 million 
Osteoporosis 					10 million 
Cancer 						8.2 million 
Alzheimer's disease 			4 million 
Parkinson's disease 			1.5 million 
Burns (severe) 				0.3 million 
Spinal cord injuries 			0.25 million 
Birth defects 					150,000 (per year) 
Total 							128.4 million

Patients for Research

    In 1999, a coalition of three dozen national nonprofit patient
organizations, the Patients' Coalition for Urgent Research (CURe), emerged to
argue for public funding of human embryonic stem cell research under guidelines
of the National Institutes of Health (NIH). This would achieve two goals: (i)
participation by the broadest number of scientists under established
peer-review mechanisms, thus rewarding the most promising research and speeding
progress, and (ii) public accountability and guidelines developed through
processes that allow for public comment on an area of science that has raised
ethical concerns (4).  
    Why a patients' coalition? As taxpayers, patients and their family members
are entitled to expect their government to make the most of a substantial
public investment in biomedical research through the NIH and other agencies.
And as the bearers of the ultimate burden when medicine cannot relieve their
suffering, patients are the most compelling witnesses to the value of research
that quite literally can save their lives.  
    In general, the patients and their advocates who are active for CURe
display tempered optimism when it comes to appraising the chances of anyone's
health benefiting soon from applications of stem cell research. Furthermore,
broad views on the ethics and appropriateness of the technology have been
expressed by those in CURe. For example, they believe in the principles of
informed consent and free choice. Stem cell research must not lead to an
underground black market in "spare" embryos for research. In addition, women
and men, as individuals or as couples, should not be paid to produce embryos
for research purposes.  
    The stories of patients and family members have fostered bipartisanship on
Capitol Hill and have effectively complemented other activities such as the
stance voiced by leading theologians from four major faiths--Roman Catholicism,
Protestantism, Judaism, and Islam--who, noting the calls of their religions for
compassion for the sick, wrote a joint letter to Congress urging federal
involvement (5). 

The Broader Stakes

    The promise of human pluripotent stem cell research increases the
likelihood that vastly more people will experience healthy and productive
aging. Age-related disease costs billions of dollars and burdens millions
physically and financially (6). The additional costs in medical and long-term
care that are incurred annually in the United States because its Medicare
recipients lose their functional independence are calculated at $26 billion
    One can imagine the cost 20 years from now in the United States alone, when
the population over age 65 is expected to double and the number of Americans
over age 85 is projected to quadruple (7). Unless bioscience engenders and
receives broad popular support, in the future, nations like the United States,
which have a rapidly increasing aging population, will more than likely
struggle with a much greater health care burden. This is why it is so important
to respect public sensibilities and to court public approval fervently, even
though it is also likely that the next discoveries will, too, collide with the
ethical and religious beliefs of some. 
    In the stem cell debate, patients have stepped forward to help draw the
line between science in service to the community and science for lesser
motives. Sadly, some of their most compelling stories will be silenced before
long by the progression of their diseases. It surely behooves us to remember
their contributions and to engage their successors, who will continue to put a
human face on the promise of biomedical research.  


1.	J. A. Thomson, et al., Science 282, 1145 (1998) [ISI] ; M. J.
Shamblott, Proc. Natl. Acad. Sci. U.S.A. 95, 13726 (1998) [ISI] . 
2.	Stem Cell Research and Applications: Monitoring the Frontiers of
Biomedical Research (American Association for the Advancement of Science and
Institute for Civil Society, Washington, DC, November 1999). 
3.	Rep. J. Dickey (R-Ark), "No such thing as spare embryos," Roll Call
(3 June 1999), p. 4; R. M. Doerflinger, testimony on behalf of the Committee
for Pro-Life Activities of the National Conference of Catholic Bishops before
the Senate Appropriations Subcommittee on Labor, Health and Education hearing
on legal status of embryonic stem cell research (Senate Hearing 105-939),
26 January 1999 (available at
4.	Goals adopted by Patients' CURe, Washington, DC, 20 May 1999. 
5.	"Theologians from four major faiths express support for Federal funding
of stem cell research," press release from Patients' CURe, Washington, DC
(14 October 1999). 
6.	A Call for Action: How the 106th Congress Can Achieve Health and
Independence for Older Americans Through Research (Alliance for Aging Research,
Washington, DC, 1999). 
7.	Independence for Older Americans: An Investment for Our Nation's
Future. A Report by the Alliance for Aging Research (Alliance for Aging
Research, Washington, DC, 1999). 

Related articles in Science:

Can Old Cells Learn New Tricks?.
Gretchen Vogel 
Science 2000 287: 1418-1419. (in News) [Summary] [Full Text] 

The Business of Stem Cells.
Eliot Marshall 
Science 2000 287: 1419-1421. (in News) [Summary] [Full Text] 

Fetal Neuron Grafts Pave the Way for Stem Cell Therapies.
Marcia Barinaga 
Science 2000 287: 1421-1422. (in News) [Summary] [Full Text] 

A Time for Restraint.  See below
Frank E. Young 
Science 2000 287: 1424. (in Viewpoints) [Abstract] [Full Text] 

Europe Confronts the Embryonic Stem Cell Research Challenge.
Noëlle Lenoir 
Science 2000 287: 1425-1427. (in Viewpoints) [Abstract] [Full Text] 

Out of Eden: Stem Cells and Their Niches.
Fiona M. Watt and and Brigid L. M. Hogan 
Science 2000 287: 1427-1430. (in Review) [Abstract] [Full Text] 

Stem Cells in Epithelial Tissues.
J. M. W. Slack 
Science 2000 287: 1431-1433. (in Review) [Abstract] [Full Text] 

Mammalian Neural Stem Cells.
Fred H. Gage 
Science 2000 287: 1433-1438. (in Review) [Abstract] [Full Text] 

Why Stem Cells?.
Derek van der Kooy and and Samuel Weiss 
Science 2000 287: 1439-1441. (in Review) [Abstract] [Full Text] 

Translating Stem and Progenitor Cell Biology to the Clinic: Barriers and
Irving L. Weissman 
Science 2000 287: 1442-1446. (in Review) [Abstract] [Full Text] 

Regulation of Cell Fate Decision of Undifferentiated Spermatogonia by GDNF.
Xiaojuan Meng, Maria Lindahl, Mervi E. Hyvönen, Martti Parvinen, Dirk G. de
Rooij, Michael W. Hess, Anne Raatikainen-Ahokas, Kirsi Sainio, Heikki Rauvala,
Merja Lakso, José G. Pichel, Heiner Westphal, Mart Saarma, and Hannu Sariola 
Science 2000 287: 1489-1493. (in Reports) [Abstract] [Full Text] 

Volume 287, Number 5457 Issue of 25 Feb 2000, p 1423 
©2000 by The American Association for the Advancement of Science. 
Copyright © 2000 by the American Association for the Advancement of Science.   


A Time for Restraint 

Frank E. Young 

   The debate on the use of human embryos for research will be one of the more
important issues of the 21st century. Unlike recombinant DNA technology,
embryonic stem cell research most probably will result in the destruction of
living embryos. Many people consider this research immoral, illegal, and
unnecessary. Therefore, it is imperative to proceed cautiously. Federal funding
of research using human embryos or pluripotent cells derived from them would be
inappropriate until further resolution of the ethical issues has been achieved.

Reformed Theological Seminary, Fourth Presbyterian Church, 5500 River Road,
Bethesda, MD 20816-3399, USA. 

    The ability to grow human embryonic stem (ES) cells in vitro challenges
governments, regulatory agencies, and scientific organizations to define the
ethical boundaries of using these cells in research. In the United States,
President Clinton charged the National Bioethics Advisory Commission (NBAC) to
review the medical and ethical considerations of this technology. In September
1999, the NBAC released the Executive Summary of its report (1). While noting
the existence of diverse views, it formulated a utilitarian approach,
justifying public funding of research with human ES cells on the basis of the
potential medical benefits. NBAC's primary concern was whether the "scientific
merit and substantial clinical promise of this research justifies federal
support, and if so with what restrictions and safeguards." Its ethical concern
was focused on restricting the sources of embryos. 
    After National Institutes of Health Director Harold Varmus publicly
supported the use of human ES cells for research, based on a decision of the
General Counsel of the Department of Health and Human Services, 70 members of
Congress signed a letter of objection. In a letter to Science in March
1999 (2), 73 scientists, including 67 Nobel laureates, endorsed Varmus'
position, claiming that it protects "the of sanctity of life without impeding
biomedical research." They noted many promising uses for ES cells, including
therapeutic advances and reduction of animal studies and clinical trials needed
for drug development. Again, the emphasis was on potential benefits, and the
ethics of embryo destruction were not addressed. 
    The fact that experiments using ES cells, as currently performed, result in
killing an embryo cannot be ignored so readily. In the United States, such
action is in violation of many state laws that protect the embryo (3). The
disintegration of human embryos or the extraction of cells from blastocysts of
human embryos [as has been described in primates (4)] for the promised but as
yet unrealized benefit of patients disregards concerns about the value of the
individual that have already been raised by the prospect of human cloning (5).
The devaluation of humans at the very commencement of life encourages a policy
of sacrificing the vulnerable that could ultimately put other humans at risk,
such as those with disabilities and the aged, through a new eugenics or
    Although there is great scientific interest in ES cell research, other
recent advances suggest that adult stem cells may be more widely distributed
than heretofore recognized and may thus obviate the need for ES cells (6).
Rather than risking public sanction and mistrust from those concerned with the
ethical, legal, and moral status of the embryo, is it not wiser to give more
than a passing mention to those concerns and in the meantime to do no harm to
living embryos? It may be tempting to pursue a scientific imperative that
impels us ever forward, but there are major costs. Regulatory policies and
processes should take into account public confidence as well as the classical
standards of safety and effectiveness. Our pluralistic society must consider
the social, religious, medical, environmental, and scientific interests of its
citizens. Once credibility is lost, acceptance is eroded.
    Should scientific research be limited only by the value of its potential
benefits? And who should make the decisions about the limits? To quote
J. A. Robertson (7), "Society, as the provider of the resources, the bearer of
the costs, and the reaper of the benefits, has an overriding interest in the
consequences of science, hence an interest in the routes and direction that
research takes." Scientists who proclaim First Amendment freedom of inquiry are
countered by a public suspicion of an inherent conflict of interest when their
research support depends on funding from federal and industrial sources.
Therefore, any commission regulating research should be composed of individuals
of many persuasions and should include people who have no direct or indirect
dependence on public monies.
    Observations from the recombinant DNA (rDNA) debate can be useful in
considering policies regarding human embryo research. The process of policy
development was public, and committees consisted of individuals with diverse
expertise, opinions, and backgrounds, including those who opposed rDNA
research. Although public debate was contentious, careful analysis of the
issues prevailed. The results demonstrated that scientists and the public can
successfully work together to decide the appropriate use of public funds and
formulate regulatory guidelines (8). 
    The following recommendations are made to facilitate a consensus. Every
nation conducting ES cell research should develop a national policy. In the
United States, a representative commission should be appointed to review ES and
adult stem cell research, develop an ethical framework for such research, and
communicate with the public. It should also examine the adequacy of current
guidelines and regulations for in vitro fertilization. A 3-year moratorium on
human embryo research should be instituted while the commission completes its
work. Sufficient funding for research on human adult stem cells and animal
embryonic and germinal stem cells should be provided during the moratorium (9).
International harmonization of guidelines could be accomplished through the
Organization for Economic Cooperation and Development. 
    To rush to approve the destruction of embryos in order to harvest and
experiment on ES cells is inadvisable and unnecessary. We should address the
ethical concerns first. 


1.	NBAC, Executive Summary, Ethical Issues in Human Stem Cell Research
(NBAC, Rockville, MD, September 1999) (available at 
2.	R. P. Lanza, Science 283, 1849 (1999) [ISI] [Medline]. 
3.	C. D. Forsythe, Valparaiso Univ. Law Rev. 32, 491 (1998) . 
4.	A. W. S. Chan, Science 287, 317 (2000) [ISI] [Medline]. 
5.	C. S. Campbell, in Cloning Human Beings, Vol. II, Report and
Recommendations of the National Bioethics Advisory Commission (NBAC, Rockville,
MD, June 1997), pp. D3-D60. 
6.	C. Frisen, C. G. Johansson, C. Lothian, U. Lendahl, Cell. Mol. Life
Sci. 54, 935 (1998) [Medline]; C. B. Johansson, et al., Cell 96, 25 (1999)
[ISI] [Medline]; S. Temple and A. Alvarez-Buylla, Curr. Opin. Neurobiol. 9, 135
(1999) [ISI] [Medline]; H. G. Kuhn and C. N. Svendsen, BioEssays 21, 625 (1999)
[ISI] [Medline]; M. Luquin, et al., Neuron 22, 743 (1999) [ISI] [Medline]. 
7.	J. A. Robertson, South. Calif. Law Rev. 51, 1278 (1978) . 
8.	Coordinated Framework for Regulation of Biotechnology; Announcement of
Policy and Notice for Public Comment, Fed. Regist. 51, 23302 (1986). 
9.	F. Young, testimony before Senate Appropriations Subcommittee on Labor,
Health and Human Services, 4 November 1999. 
10.	F.E.Y. is a former commissioner of the U.S. Food and Drug

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