Research Facts Sheet 387-H01 Sociology of Health First Name: Ninoska Student ID: 063 053 2 Topic: Stem

Cell Research Research Question: Is it possible to protect the strict boundaries inherent in "the sanctity of life" and still harvest these cells to help the living among us? Theoretical Perspective: Social Conflict Fact 1: RELIGION, THE LAW, AND MEDICAL ETHICS "Those who support a total ban on embryonic stem cell research sometimes talk as if theirs are the only views based on moral principle. But whatever else might be said in response to their arguments, there is another moral ideal that is often lost in this debate. This is, of course, the value of democracy... ...These democratic processes deserve protection from those, both inside and outside parliament, who would seek to subvert them. And taking the value of democracy seriously entails that legislation which ought to be passed will sometimes not reflect a particular parliamentarian’s own moral convictions, no matter how deeply they are held." (Oakley, 2002, pg. 228) Interpretation of Fact 1: To respect the sanctity of democracy, which is also based on moral principle, it is sometimes necessary to put one's own personal beliefs aside. Those that are elected to government, are done so in a democratic fashion, we therefore hope that the protection of democracy is something that will never be compromised. Fact 2: Last Name: Garcia-Ortiz Date: March 19, 2007

"In the process of pursuing the elusive stem cell and its promise of universal healing, we stand to gain important insight into the nature of human life itself. Along with our obvious advances, we have evolved into a species with remarkably restricted regenerative capacity. Our bodies have long lost the forethought of indefinite growth possessed by the sequoia or the carp. Unlike starfish or newts, we can no longer replace lost limbs. And as we grow older, our own aging populations of stem cells cannot keep up with our failing bodies. We have paid a heavy price for our high vantage point on the evolutionary tree. It remains to be seen whether a growing understanding of our own phylogenetic limitations will be sufficiently profound to overcome them. The Promethean prospect of eternal regeneration awaits us, while time's vulture looks on." (Rosenthal, 2003, pg. 274) Interpretation of Fact 2: Stem cell research promises not only scientific and medical discoveries, but an insight into human life. As humanity has evolved, we've lost the primitive ability to quickly and effectively self regenerate. As we continue to evolve, the current ability of stem cells may also be lost. Being at the top of the evolutionary pyramid has cost humanity an irreplaceable loss whose necessity will only be evident as we continue to evolve. Fact 3: "A distinction between deriving and using derivatives, when expressed by reference to the embryo rather than the investigator, is a distinction between killing and using remains." (Guenin, 2005, p. 05) Interpretation of Fact 3: Is there a difference between creating a human embryo for research purposes or using the remains of an embryo killed by a third party?

Fact 4: "The science of human embryonic stem cells is in its infancy, and the current policies threaten to starve the field at a critical stage." (Daley, 2004, pg. 627) Interpretation of Fact 4: This is an ironic metaphor. "Stem cell research" can be viewed as the "embryo" that is being debated and the current "legislation and policies" viewed as the "researchers and scientists" that destroy the preciously fragile. Both, stem cell research and the embryo are being prevented from reaching their full, God intended potential. Fact 5: "Indeed, one could argue that governmental intervention in the scientific process actually contributed to some of the problems: in South Korea, government officials may have been complicit in motivating Hwang to publish prematurely. And in the United States and elsewhere, governmental restrictions on funding for stem-cell research have enabled a few well-funded investigators, such as Hwang, to fill the void, establish a monopoly on certain procedures or knowledge, and deprive science of what it needs most — an opportunity for the rapid, independent validation of data." (Snyder & Loring, 2006, pg. 322) Interpretation of Fact 5: The fraud that occurred in South Korea has made the public realize that embryonic stem cell research is not just a new branch of science, but also an untapped market potential. By claiming ownership on technological advances, scientific methods are becoming commodities as opposed to legacies of knowledge. Fact 6:

"Deriving new cell lines by means of SCNT will require recruiting women to donate oocytes, which have rarely been solicited for research purposes in this country." (Okie, 2005, pg. 3) Interpretation of Fact 6: The reality is that to make an embryo, whether in the hopes of accomplishing a viable pregnancy, or for the purpose of extracting it's genetic material, women are needed. This branch of science would not exist without the web-weavers of life. Despite Women's equality movement, women still remain the most socially vulnerable when it comes to workplace compensation. The fear is that financially vulnerable women may resort to egg donation, which has serious risks associated with it, as a way of supplementing their income. Fact 7: "Proposition 71, the California Stem Cell Research and Cures Initiative, would create the California Institute for Regenerative Medicine, which would allocate, over a 10-year period, at least 90 percent of its funds as grants to academic researchers in California through a competitive, peer-reviewed process that mimics the approach of the NIH. Up to 10 percent of the funds would be awarded rapidly — again in a competitive, merit-based process — for the construction or development of scientific and medical research facilities where the research could be conducted. A working group on scientific and medical accountability standards, composed of ethicists and scientific and clinical experts, would establish rigorous research and ethical standards..." (Yamamoto, 2004, pg. 1711) Interpretation of Fact 7: Due to legislation prohibiting NIH grants from funding Stem-Cell research on lines created after 2001, a coalition of citizens, scientists, and businesspeople put before the state of California a

proposition to establish a bond measure to provide state funds for human embryonic stem-cell research at California's public and private academic research institutions. The granting of funds would be done by a board of ethicists, scientific and clinical experts through a competitive peer reviewed process. Fact 8: "The quality of the research is at issue as well. Brody worries that smaller states won't be able to replicate rigorous grant peer review. Weissman is most concerned that the considerable monies available could lead to the wasting of funding on subpar research. He advocates carrying the money forward until it can be well spent, perhaps on expensive clinical trials that are years away." (Guenin, 2005, p. 07) Interpretation of Fact 8: Size is quality. Smaller states may waste allocated funds on inferior quality research, due to the inability of appropriately determining grant merit. The suggestion is to hold the funds until a more deserving, expensive trial comes along. Fact 9: "But even if all problems were overcome, would SCNT stem cells ever be a realistic clinical option? Probably only for the very rich. Any such personalized treatment will always remain labour intensive, and hence expensive." (McLaren, 2001, 131) Interpretation of Fact 9: The potential of stem-cell treatments could be endless. It could be the new "antibiotic" to cure an endless list of afflictions plaguing humanity. However, like with the release of all new technology, whether it's the introduction of CD burners in the 90's, or the holy grail of humanity that stem-cell promises to be, they are usually accompanied by a price tag that is dismissed only by the wealthy.

Fact 10: "We really don't know what will ultimately come out of research on embryonic stem cells. It is important to play down promises to the public that the work will produce anything of clinical value in the foreseeable future. We simply don't know how an embryonic stem cell will behave in a human, and we don't know whether human marrow contains a pluripotent stem cell that can transdifferentiate. Equally important, we don't yet know whether research on embryonic stem cells will teach us how to revise the differentiation program of a tissue-specific stem cell, thereby circumventing the need for embryonic cells." (Schwarts, 2006, pg. 1189) Interpretation of Fact 10: Stem cell research is such a new science, that perhaps it has been given more credit than it deserves. Many terminally ill patients see the promise of stem cells as the only life saving option. If this technology doesn't result in anything positive, it would be incredibly

disappointing to many. But the reality is that much is still unknown. Scientists cannot even guarantee that embryonic stem cells from humans are more valuable than other stem cells.

Conclusion: Democracy is a form of protection. The populations of democratic countries are secure in the knowledge that important decisions will not be made on an individual basis, but will follow the rules of debate, consideration and approval set up by that country. The ideals of democracy are so cherished that wars have been waged and lives have been lost and sacrificed over it. An imposition of ones personal beliefs and values, now matter how well intentioned, is a disregard to democracy. Religion is democracy's "Anti-Christ". There is no room to question motives, in

some religions it's even considered a form of blasphemy. Social conflict was at it's peak during the Dark Ages, when religion ruled through ignorance and fear. The Renaissance was not only a rebirth of society, but the enlightenment of discovery. It was the beginning of the end of Religion's vision of world domination. With enlightenment and discovery came education, and the desire to enquire about the unknown, not fear it. The impoverished began to realize they were the majority. As the centuries rolled forward, wars continued, however, they began to take on a different tone. Blood was being spilled for democracy. It was after all, mostly the blood of the impoverished. Why not spill it for something that you believe in? Democracy became the foundation of balancing society. The rich would still continue to be rich, however, they would not be able to impose their beliefs on the poor. Even religion, whether it is a representative of Allah, Buddha, or Jesus, must also abide by Democracy's rules. The laws of evolution state that as humanity advances, we are constantly trying to better and ameliorate our standard of living. The quest for evolution has become so tunnel-vision that we are almost indifferent to the consequences of our actions, and ignorantly claiming each advance as a victory. We have failed to acknowledge that humanities evolutionary quest has resulted in many interspeciary casualties, ranging from humans to microscopic life forms. We see the prolonging of life as a medical advancement, and fail to recognize that death is an unavoidable link in the chain of life. Stem cells hold much promise, but at what price? In 1995, a piece of federal legislation passed by United States Congress, and signed by former president Bill Clinton prohibits the Department of Health and Human Services from using appropriated funds for the creation of human embryos for research purposes or for research in which human embryos are destroyed. The legislation, known as the Dickey Amendment, does not provide a clause, or a prohibition against using the remains of embryos. The argument is that researchers are not deriving (facilitating, or creating the creation or death of an embryo), but

merely using available derivatives (perhaps supplied by countries with no current legislation against the creation and destruction of human embryos). Since the material being used has already been killed, by no actions of the researchers, they should not be discriminated against in regards to funding. On August 9, 2001, American president George W. Bush, announced that research on human embryonic stem cells created before that date would be supported by federal dollars; research on lines created later would not. Since that announcement, there has been the creation of an additional 128 lines from embryos carrying genetic diseases such as neurofibromatosis type 1, Marfan's syndrome, the fragile X syndrome, myotonic dystrophy, and Fanconi's anemia. Research on these novel lines can still go forward, however must do so without grant support from the National Institutes of Health. The options that remain are to find funding from private foundations or philanthropic sources. The private sources are under no obligation to direct research in a non-discriminatory fashion. What happens when health care research is turned over to private sources? It is no longer about treating the sick, it becomes about stocks and trade prices, balancing the cost of production, which in the case of stem cells includes research, and the race to be the first to claim “ownership” on a discovery. Health care then becomes a game. And like in all games, there are clean players, and there are dirty players. In 2004, the laboratory of Woo Suk Hwang of Seoul National University in South Korea announced that it had created embryonic stem cells that were genetically identical to the affected patient, without having to fertilize the oocyte. This claim was more a technological than a biological advance, and would permit the capability of generating lines that are immunologically and genetically matched to patients who could then receive stem-cell transplants and of making stem-cell lines for research that faithfully model human diseases. Within six months of this

publication, independent research concluded that Hwang’s claims were false. Speculations were that the South Korean government was so eager to claim rights on discovery of this technology, that they were increasing pressure on the laboratory. As in all games, there are winners, and there are losers. In the South Korean example, it became evident that the biggest losers were actually victims of coercion, and an ethical lapse of confidentiality. It was later discovered that the lab not only used oocytes that were donated from willing women, but also used those of members of the research team, which was not done under voluntary circumstances. The procedure of oocyte is one that is not without danger. In some countries, women egg donors are paid anywhere from $5000 to $25,000 per cycle. This financial incentive may influence women to accept unnecessary risk. The most serious risk being ovarian hyper stimulation syndrome which can be a result of the daily dose of recombinant human follicle-stimulating hormone necessary to trigger the development of multiple ovarian follicles. An ultrasound guided needle is inserted through the vagina, and the eggs extracted. A twisted perspective, however one that cannot be ignored, is that from biblical times to present day, men have been asking women to lay on their backs, either for their own gratification, or for their scientific egos. Women can always count on employment in the oldest profession known to man, regardless of their educational, social, or financial background. The customers of

prostitutes only require them to have female sex organs, and be physically desirable to them, at that moment. The scientific customers only require donors to have female sex organs, and be of desirable age. Due to governments position and fears associated with embracing stem-cell research, it has left the door wide open for independent groups to sink their talons into the delicate flesh of this new science. With non-governmental groups directing the path of stem-cell research, there is no promise of democracy, or even the guarantee that decisions will be made for the greater good.

It’s quite fearful to think that pharmaceutical industries sponsoring and financing this research are capable of obscuring and hiding new discoveries that could potentially eradicate plaguing diseases that currently exist. It is more profitable to market the life extending anti-viral

medications for HIV, which will ensure recurrent customers, promising them the hope that a cure is within reach, than to market a one time cure, that requires no follow up. "Stripped of ethical rationalizations and philosophical pretensions, a crime is anything that a group in power chooses to prohibit." (Freda Adler, President of the American Criminological Society for the 1994-1995 term) The obvious problem with allowing a board selected by a group of citizens, scientist and businesspeople is who will be in the position to regulate their appointment and their decisions. Research policies and protocols will always be influenced by "who" is funding the project. The unfortunate reality is that the value of a human life has become equivalent to a Monopoly dollar. A CEO of a company who's most recent acquisition is a research institute conducting stem cell research based studies to eradicate Parkinson's Disease, would find it more financially profitable to redirect studies towards a condition affecting 57% of the male population, Alopecia, also known as male pattern baldness. Who will determine what project are inferior? A committee consisting of members who's children suffer from diabetes will obviously prioritize all projects focusing on diabetes research. If a project is determined to be of greater importance, will funds being held by smaller states be diverted to more pressing projects? Who is responsible for determining how funds should be allocated? What assurance is there that these decisions are a reflection of the general population, and not a personal interest? One fact that remains clear is that those who can, do. The answer to these questions are irrelevant to those who can afford to travel to countries with more flexible laws, where stem-cell research is not so strictly regulated. Laws turn a blind eye to those who

can pay for induced blindness. In society, these benefits have always, and will always be afforded to those who can pay.

Works Cited

Daley, George Q., M.D., Ph.D. (2004). Missed Opportunities in Embryonic Stem-Cell Research [Electronic version]. The New England Journal of Medicine, 627-628. Guenin, Louis M. (2005, August 2). A Proposed Stem Cell Research Policy Stem Cells, DOI: 10.1634/stemcells.2005-0202. Retrieved February 24, 2007 from http://stemcells.alphamedpress.org/cgi/reprint/2005-0202v1.pdf McLaren, Anne (2001). Ethical and social considerations of stem cell research. Nature, 414, 129131. Retrieved March 3, 2007, 04:55 from https://www.lib.uwo.ca/cgibin/ezpauthn.cgi?url=http://www.nature.com/nature/journal/v414/n6859/fig_tab/414129a 0_F1.html Oakley, Dr. J. (2002). Democracy, embryonic stem cell research, and the Roman Catholic church. Journal of Medical Ethics, 28, 228. Retrieved March 3, 2007, 01:18 from http://jme.bmj.com/cgi/content/full/28/4/228?maxtoshow=&HITS=10&hits=10&RESUL TFORMAT=&fulltext=embryonic+stem+cell+research&andorexactfulltext=and&searchi d=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT Okie, Susan, M.D. (2005). Stem-Cell Research — Signposts and Roadblocks [Electronic version]. The New England Journal of Medicine, 1, 1-6. Retrieved February 24, 2007, from http://content.nejm.org/cgi/content/full/353/1/1. Rosenthal, Nadia, Ph.D. (2003). Prometheus's Vulture and the Stem-Cell Promise. The New England Journal of Medicine, 349:267-274. Retrieved March 2, 2007, 05:20 from http://content.nejm.org/cgi/content/full/349/3/267?andorexacttitleabs=and&search_tab=ar ticles&tocsectionid=Original+Articles&tocsectionid=Special+Reports&tocsectionid=Spe cial+Articles&tocsectionid=Videos+in+Clinical+Medicine&tocsectionid=Clinical+Practi ceAORBClinical+Therapeutics&tocsectionid=Review+ArticlesAORBClinical+PracticeA ORBClinical+Implications+of+Basic+ResearchAORBMolecular+MedicineAORBClinica l+TherapeuticsAORBVideos+in+Clinical+Medicine&tocsectionid=EditorialsAORBPersp ectiveAORBOutlookAORBBehind+the+Research&tocsectionid=Sounding+BoardAORB Clinical+Debate&tocsectionid=Clinical+Implications+of+Basic+Research&tocsectionid= Health+Policy+ReportsAORBHealth+Policy+2001AORBQuality+of+Health+Care&sear chtitle=Articles&excludeflag=TWEEK_element&sortspec=Score+desc+PUBDATE_SOR TDATE+desc&hits=20&where=fulltext&andorexactfulltext=and&fyear=1996&fmonth= Nov&searchterm=embryonic+stemcell+research&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT Schwartz, Robert S., M.D. (2006). The Politics and Promise of Stem-Cell Research. The New England Journal of Medicine, 355, 1189-1191. Retrieved March 13, 2007, from http://content.nejm.org/cgi/content/short/355/12/1189

Snyder, Evan Y., M.D., Ph.D. & Loring, Jeanne F., Ph.D. (2006). Beyond Fraud — Stem-Cell Research Continues [Electronic version]. The New England Journal of Medicine, 4, 321323. Yamamoto, Keith R., Ph.D. (2004). Bankrolling Stem-Cell Research with California Dollars. The New England Journal of Medicine, 351, 1711-1713. Retrieved March 2, 2007, 02:38 from http://content.nejm.org/cgi/content/full/351/17/1711?andorexacttitleabs=and&search_tab= articles&tocsectionid=Original+Articles&tocsectionid=Special+Reports&tocsectionid=Sp ecial+Articles&tocsectionid=Videos+in+Clinical+Medicine&tocsectionid=Clinical+Pract iceAORBClinical+Therapeutics&tocsectionid=Review+ArticlesAORBClinical+Practice AORBClinical+Implications+of+Basic+ResearchAORBMolecular+MedicineAORBClini cal+TherapeuticsAORBVideos+in+Clinical+Medicine&tocsectionid=EditorialsAORBPer spectiveAORBOutlookAORBBehind+the+Research&tocsectionid=Sounding+BoardAOR BClinical+Debate&tocsectionid=Clinical+Implications+of+Basic+Research&tocsectionid =Health+Policy+ReportsAORBHealth+Policy+2001AORBQuality+of+Health+Care&sea rchtitle=Articles&excludeflag=TWEEK_element&sortspec=Score+desc+PUBDATE_SO RTDATE+desc&hits=20&where=fulltext&andorexactfulltext=and&fyear=1996&fmonth =Nov&searchterm=embryonic+stem-cell+re

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