|
Survey of Medical Research Associations and Foundations By the state office
of the Bishops’ Pastoral Plan for Pro Life Activities BACKGROUND: 30 medical research associations/foundations were contacted (May 2000) and asked to respond in writing to the questions listed below. A follow-up letter was sent two months later (July 2000) to associations not responding to the first inquiry. QUESTIONS:
RESULTS: Non-respondents: The following associations/foundations did not respond: Alliance for Aging Research National Parkinson Foundation American Auto-Immune Disease Assoc. National Spinal Cord Injury Association American Paralysis Association Neurological Disorders Research Coalition Epilepsy Foundation of America Parkinson’s Disease Foundation Huntington’s Disease Society Spina Bifida Association of America National Hemophilia Foundation Tourette Syndrome Association National Infertility Association United Parkinson Foundation Lymphoma Research Foundation Respondents: The following organizations openly support and advocate for aborted fetal tissue research, embryonic stem-cell and/or cloning research. National Multiple Sclerosis Society: “Responsibly obtained stem cells (from embryos that remain from couples who have undergone in vitro fertilization) and fetal tissues (available after legal elective pregnancy termination) are a vital and irreplaceable resource for biomedical research. In MS research, use of stem cells and fetal tissues will help us understand how damaged brain cells may be repaired and replaced.” American Diabetes Association: “Therapeutic cloning involves combining an unfertilized egg with the nucleus of an adult human cell in order to derive stem cells that would only be used for medically therapeutic purposes. The ADA believes that such research should be allowed to progress, and opposes the criminalization of and any ban on therapeutic cloning research.” Juvenile Diabetes Foundation: “One of the most promising ways of curing diabetes is to biologically restore the function of islet (insulin-producing) cells…the availability of stem cells would significantly expedite research progress. We believe that the Human Embryo Research Panel’s report provides a scientific and ethical basis to justify federal funding for human stem cell research. Stem cells are currently derived from...(donated) embryos…and…tissue from terminated pregnancies.” March of Dimes:. . . “the foundation’s medical research requires analysis of cells of fetal origin, and this research has lead to breakthroughs that save babies’ lives. Fetal tissue research has contributed to major advances in prenatal and postnatal disease prevention and treatment…it is more common to use tissue from induced abortions (than from miscarriages) for research requiring fetal tissue.” Glaucoma Research Foundation: “…we support the development of appropriate safeguards to allow this research to move forward…stem cell research has the potential to save millions from the horrors of not only glaucoma but such diseases as Alzheimer’s, Parkinson’s, diabetes, and even cancer…Stem cells are the undeveloped ordinary cells of very early-stage embryos. Many of these embryos have been grown in a laboratory from fertilized eggs; they were produced for in-vitro-fertilization but were later unused or donated…” The American Cancer Society stated that it “has consistently supported, both in its written formal testimony and in oral testimony to policymakers, the proposed National Institutes for Health (NIH) guidelines for scientific research using human embryonic stem cells. The Society believes that such research holds extraordinary potential in the fight against a variety of life-threatening diseases currently afflicting an estimated 140 million Americans.” The Society itself is “funding [research] into the specific efficacy of human adult stem cells or umbilical cord blood. The American Cancer Society remains hopeful that both the government and commercial sectors will continue to work collaboratively and with an open mind to explore additional solutions that will allow for the continuation of human embryonic stem cell research as necessary and appropriate.” Several responses were ambivalent, or stated that the survey did not really apply to them or that they were “neutral” on the issues. The National Osteoporosis Foundation claims that it holds a “neutral” position on this research; follow-up will be attempted to ascertain whether they actually fund research or not. 2 foundations, The American Institute for Cancer Research and the National Coalition for Cancer Research state that they do not fund research, but are more involved with public education about the importance of a national cancer program, or about diet, nutrition, and links to cancer. They say they neither fund fetal tissue research, nor engage in lobbying or fund-raising efforts to promote same. The following respondents say that they do not fund or lobby for fetal tissue or embryonic stem cell research. Cystic Fibrosis Foundation: “The scope of cystic fibrosis research supported by the Cystic Fibrosis Foundation does not require fetal tissue studies. Most CF scientific research is based on human cells that are taken from people living with the disease.”(Response requires more follow-up since they are on above mentioned lobbying lists.) National Kidney Foundation: “I am confident (after reviewing our research grants) that we can answer no to each of the four questions you posed regarding human fetal tissue and stem cell research.” American Lung Association: “I am not aware of any support for, lobbying for or funding of, research or transplantation involved human fetal tissue acquired from induced abortion emanating from the American Lung Association of Nebraska. (However) I have requested a copy of any position our national office has on the subject.” (We have not received a copy of such position...this association’s name has also appeared on lists of organizations lobbying for federal support of stem cell research.) Children’s Leukemia Research Association responded that they were not aware of funding such research or seeking support for federal funding. However, we could contact their “board” which makes funding decisions, for more information. American Heart Association “The American Heart Association’s Board of Directors…approved standards for continued funding of adult stem cell research but said it will not fund human embryonic stem cell research. The board’s decision came after consideration of commentary from the Association’s constituents—volunteers, donors and the general public.” “The American Heart Association will not actively support or lobby in favor or [embryonic stem cell] research.” Alzheimer’s Association The Alzheimer's Association officially opposes any restriction or limitation on human stem cell research. However, it does not fund embryonic stem cell research and has never spent time or resources lobbying for it. Copies of the actual responses received are available upon request. Before decisions are made to support or reject any medical charity, it is recommended to contact its national office directly to determine if its policy regarding embryo-destructive research has changed. SUPPLEMENTAL
INFORMATION ALZHEIMER'S ASSOCIATION The Alzheimer's Association supports Title I of HR 2281 and S 1902, which would allow federal funding of fetal tissue transplantation research with safeguards to protect against exploitation and commercialization of the procedure (same as 1995). The Alzheimer's Association supports fetal tissue transplantation research only with the safeguards recommended by the NIH Transplantation Research Panel and specified in HR 2281 to assure that the two procedures, abortion and transplantation, are kept clearly separate; in particular, that a decision regarding abortion is in no way influenced by research. “The Alzheimer’s Association is not currently lobbying, nor have we ever lobbied, the United States Congress on the issue of federal funding for stem cell research. No staff member from the Public Policy Office has made any visits to members of Congress to discuss stem cell research, nor has the Association testified at any of the stem cell hearings Congress has held to date. Although the Association has adopted a position in support of stem cell research, this is not a priority legislative issue for the Association. Since stem cell research is not a priority legislative issue, we are not spending any time or resources lobbying on it.” Jennifer Zeitzer, Associate Director, Federal Policy October 2005, e-mail to Karen Noel, Great Plains Chapter. AMERICAN ACADEMY OF PEDIATRICS This organization is in the process of updating its policy statement on fetal therapy. AMERICAN CANCER SOCIETY That several areas of research directly related to the cancer problem have benefited from the use of human fetal tissue. To the cancer investigator, the advantage of fetal tissue is that among all biological materials, it is immunologically more "neutral" than similar tissues from infants or adults. For example, in immunology research, where the goal is successful organ transplantation, the ability to make use of fetal tissue could be critical to success in saving the lives of cancer patients. Another example is the unique lack of immunologic responsiveness of fetal tissue, which facilitates basic research into immunologic mechanisms that directly bear on tumors such as the malignant lymphomos. Other areas of cancer research, which have been shown to benefit from the ability to make use of fetal tissues, include hematopoietic (blood) stem cell growth and solving the problem of graft-versus-host disease. Policy is the same as in 1991. In a 2001 response they add: The American Cancer Society understands that scientific research using embryonic stem cells and fetal tissue holds extraordinary potential in the fight against cancer and other life-threatening diseases currently afflicting more than 140 million Americans. However, the American Cancer Society believes that any such research should be conducted only when and if the Federal government affirms the value of this science and develops the necessary oversight and regulation to provide the protections under which such research could be pursued. The American Cancer Society has never funded any scientific research using human fetal tissue or human embryonic stem cells. The American Cancer Society has chosen to continue funding peer-reviewed scientific inquiry that could offer alternatives to the use of embryonic stem cells or fetal tissue. Such alternatives could include the study of stem cells derived from adult or umbilical cord blood sources. CLONING: The American Cancer Society does not support cloning of humans. The Society does support research using techniques that would further our knowledge of how cancer can be prevented, detected and cured. This may involve human cells in tissue culture in which the chromosome content would be altered. AMERICAN COLLEGE OF PHYSICIANS/AMERICAN SOCIETY OF INTERNAL MEDICINE The ACP-ASIM has no policy statements on any of these issues. As you noted in your letter, the college took a neutral position in 1991 testimony on the scientific evidence concerning abortion. AMERICAN COLLEGE OF OBSTETRICIANS AND GYNECOLOGISTS Conclusion from a nine-page report: The ACOG Committee on Ethics has offered a position that approves preembryo research but limits it according to ethical guidelines. This position advocates treatment of the preembryo with respect but not the same level of respect as is given to human persons. It is a position that will be acceptable even to those who accord full respect to embryos and fetuses but not to those who believe that full respect ought to be extended to the gamete, zygote, and preembryo throughout the process of fertilization and beyond. In arriving at it position, the ACOG Committee on Ethics considered scientific and clinical information relevant to ethical analysis, though it recognizes the role of both scientific and ethical interpretation of what cannot be simply incontrovertible "facts." The ACOG Committee on Ethics once again acknowledges that no single position can encompass the variety of opinions within the membership of ACOG, and it affirms that no physician should be required to participate in preembryo research if he or she finds it morally objectionable. Nonetheless, it is important to public discourse and to the practice of responsible medicine that physicians become aware of the medical and ethical issues involved in the complex area of preembryo research. To advance this discourse, it is helpful for physicians to reflect on and share the basis of their own views and to recognize and explore the ethical perspectives of their patients and colleagues. AMERICAN DIABETES ASSOCIATION The American Diabetes Association supports the use of human tissue in biomedical research provided such use is consistent with Federal Guidelines and has been approved by the investigator's local institutional review board (same as 1989). As of 2001, according to their web site: "The American Heart Association does not fund scientific research that involves human fetal tissue." "Our Research Program has funded no grants using human fetal tissue." "The American Heart Association funds meritorious research involving cloning as part of our scientific research grant program. This includes research involving human DNA sequences and cell lines, and animals. It excludes cloning to create humans and cloning to create humans or embryos for research purposes." "The American Heart Association funds meritorious research involving human adult stem cells as part of our scientific research grant program. We do not fund any research involving stem cells derived from human embryos or fetal tissue." "The American Heart Association is refusing to join the claque demanding federal sponsorship of embryonic human stem cell experimentation, after experiencing pressure from financial backers last year over the AHA's embrace of the unethical approach. 'A flood of protest letters' followed the AHA's decision 'to spend of its own money to see whether the [embryonic stem] cells could ease heart disease,' reports Los Angeles Times staff writer Aaron Zittner. One of those letters, writes Zittner, came from the Roman Catholic Archbishop of Saint Louis. 'In Missouri,' he reports, 'an entire fundraising committee resigned, dropping its plans for a gala ball. Donors who opposed abortion said they could not support the destruction of human embryos.' (Life Advocacy Briefing #8-24, June 25, 2001) "Officially, the national board of the American Heart Association supports federal funding for the research, but the group is not lobbying Bush for it, and it declines to spend any of its $133 million annual research budget on embryo experiments." (Los Angeles Times, June 21, 2001) "It also will continue to endorse government supported embryonic stem cell research, but with no association money or staff support." (Women's e-news, run date: 6/23/01, Heart Association Bows to Anti-Abortion Forces) AMERICAN LUNG ASSOCIATION The ALA/ATS believes the moratorium on federal funding of research involving fetal tissues should be lifted and fetal tissues research should be reinstated. The ALA/ATS expresses its support for the concept that science should be conducted ethically on the basis of scientific merit. Further, rules that apply to organ transplants involving all (infant, child, adult) donors should also apply to the use of fetal organs and tissues in research and transplantation. Currently, for the purposes of organ transplantation involving adult, child, or infant donors, the cause of death is not taken into consideration and state laws and the Uniform Anatomical Gift Act provide the same protection for a fetus as for a perspective child or adult organ donor (same as 1992). ASSOCIATION OF AMERICAN MEDICAL COLLEGES The Association of American Medical Colleges sent a 34-page booklet on Fetal Research and Fetal Tissue Research. Nowhere in the booklet is their statement on fetal tissue. Human Cloning: They endorse a five-year voluntary moratorium on the cloning of human beings; supports the Food and Drug Administration's decision to assert regulatory authority over human cloning; and, opposes any attempt to write legislation that would ban cloning research or technology. EPILEPSY FOUNDATION The Epilepsy Foundation responded with their 1995 annual report. There is nothing in it about fetal tissue research or cloning. HUNTINGTON'S DISEASE SOCIETY OF AMERICA Huntington's Disease Society of America supports the use of fetal tissue for research into the causes, treatment and cure of HD, under appropriate guidelines and safeguards (adopted August 1988). JUVENILE DIABETES FOUNDATION INTERNATIONAL JDF and diabetes researchers around the world were excited to learn late last year about the scientific discoveries where researchers were able to isolate stem cells. JDF supports this area of research…Stem cells have the potential to develop into any tissue or organ in the body, and yet cannot develop into a full human being. MARCH OF DIMES BIRTH DEFECTS FOUNDATION Fetal tissue research has been conducted since the late 1800s and has provided most of our knowledge about development before birth. Such research uses cells and tissues that are no longer alive…Tissues obtained from spontaneously aborted fetuses (miscarriages) can occasionally be used in fetal tissue research. However, because miscarriages usually occur as a result of genetic or other disease processes, it is more common to use tissue from induced abortions for research requiring fetal tissue. The MOD has provided funding for projects that involved research on fetal tissue throughout history. The March of Dimes recognizes that there is ongoing ethical debate about fetal tissue research. Without trying to settle that debate, the March of Dimes concurs with current federal policy on fetal tissue research, with safeguards against abuse or incentives for abortion. CLONING: The March of Dimes supports research with cell tissue cultures and with animals in areas of developmental and reproductive biology relevant to its mission. The Foundation has never supported, does not now support, and has no plans to support any research directed toward the cloning of humans. The March of Dimes recognizes, respects - and shares - the profound concerns generated by the prospect of human cloning, and believes that research directed toward human cloning should be discouraged. The response to our moral concerns about human cloning should not, however, deter the progress of promising research, which could provide critical new insights into developmental biology and genetics. MUSCULAR DYSTROPHY ASSOCIATION From the MDA web site: MDA-funded researchers have addressed these problems by experimenting with both embryonic and adult-derived stem cells, each of which has distinct potential advantages. (In accord with federal policy set by President Bush, MDA's support of human embryonic stem cell research is limited to some 75 stem cell "lines" created before August 2001.) In principle, adult-derived stem cells could be harvested from the person in need of treatment, corrected for any genetic defects, and transplanted where they're needed, circumventing the problem of immune rejection. Embryonic stem cells, on the other hand, are believed capable of generating more cell progeny and a greater variety of cell types." NATIONAL MULTIPLE SCLEROSIS SOCIETY To hold open the door to people with MS, the National Multiple Sclerosis Society supports the use of fetal tissue in biomedical research under the following conditions: The establishing of a supervisory panel on ethics that would advise the Secretary of Health and Human Services on ethical implications of any biomedical research which has been recommended for funding by the professional peer review panels. The establishing of specific criteria that would determine the circumstances under which fetal tissue might be used for therapeutic transplantation purposes and the implementing of strict controls to ensure that the criteria are adhered to. NATIONAL PARKINSON FOUNDATION, INC. The National Parkinson Foundations only response was "The study of toxicity directly in man is not ethical and would not be acceptable to most individuals in our society." The following organizations did NOT respond: American Medical Association Revised: 20 Apr 01 Susan G. Komen Foundation: http://www.prolifewaco.org/KomenControversy.htm |