[Congressional Record (Bound Edition), Volume 146 (2000), Part 2]
[Extensions of Remarks]
[Pages 1796-1797]
[From the U.S. Government Publishing Office, www.gpo.gov]



                           STEM CELL RESEARCH

                                 ______
                                 

                        HON. CAROLYN B. MALONEY

                              of new york

                    in the house of representatives

                       Tuesday, February 29, 2000

  Mrs. MALONEY of New York. Mr. Speaker, Daniel Perry, with the 
Alliance for Aging Research, contributed an important article on stem 
cell research and ethics to the February 25, 2000 issue of Science. I 
submit it for the Record and urge my colleagues to read it carefully.

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

                           (By 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.
       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 embryo research (3).

 TABLE 1. PERSONS IN THE UNITED STATES AFFECTED BY DISEASES THAT MAY BE
             HELPED BY HUMAN PLURIPOTENT STEM CELL RESEARCH
------------------------------------------------------------------------
                                                            Number of
                                                             persons
                       Condition                          affected  (in
                                                            millions)
------------------------------------------------------------------------
Cardiovascular diseases................................           58
Autoimmune diseases....................................           30
Diabetes...............................................           16
Osteoporosis...........................................           10
Cancer.................................................            8.2
Alzheimer's disease....................................            4
Parkinson's disease....................................            1.5
Burns (severe).........................................            0.3
Spinal cord injuries...................................            0.25
Birth defects..........................................            0.150
                                                        ----------------
      Total............................................          128.4
------------------------------------------------------------------------
Data are from the Patients Coalition for Urgent Research, Washington,
  DC.
 
Per year.

                         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

[[Page 1797]]

     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 
     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.


                          References and Notes

     1. J. A. Thomson et al., Science 282, 1145 (1998): M. J. 
     Shamblott, Proc. Natl. Acad. Sci. U.S.A. 95, 13726 (1998).
     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 frwebgate.access.gpo.gov /cgl-bin /getdoc.cgl ?dbname= 
     105_ senate_ hearings&docid= f:54769.wals).
     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).