Science, 25. Feb 2000, Vol 287, No. 5457, page 1423
Patients’ Voices: The Powerful Sound in the Stem Cell Debate
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.
Daniel Perry
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 (3).
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 (7).
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.