SOCIOECONOMIC IMPLICATIONS OF FETAL TRANSPLANTATION AN EXERCISE IN BIOETHICS

Gene Davis, Susan Goldie, Robert Stamper
1992 Woodrow Wilson Biology Institute

New discoveries in biology and the technological application of these discoveries lead to many ethical problems. If our students are to be prepared for a life that will be surrounded by these dilemmas, they must be given the opportunities to think about the implications inherent in the novel situations that will arise. Actually. many ethical and moral problems appear almost daily in the current news. This module attempts to present students with a typical situation, requiring them to learn some basic information in order to understand the problem and to delve into their own personal ethics to arrive at a resolution of the problem. The exercise uses various techniques that are considered to be essential in the development of a mature social ethic.

Objectives:

1. examine and study an ethical problem

2. practice techniques for making ethical decisions

3. interact with each other in the resolution of ethical problems

4. review some basic concepts in immunology by using a case study involving this discipline

Teacher Directions:

Format:

Students are divided into groups of five to seven. They select a leader to control the activity, a recorder to write down the group responses and a dealer to pass out information cards. As a group they answer questions and discuss the ethical problems when read by the group leader.

The teacher should roam about the room to act as a facilitator and to keep students on task.

Time:

The teacher has the option to delete specific questions, ethical discussions and/or story segments.

Materials:

• One student activity sheet per group.

• One envelope with a complete set of information cards.

• A response sheet for the recorder to make entries. A special response sheet may be prepared by the teacher for specific purposes, including evaluation.

Grade Level:

Subject Fields:

Student Preparation:

If students have never discussed ethical problems or case studies before, some basic directions would be necessary. Also, it is necessary that the students have previous knowledge of some very basic embryology and immunology. (Check the information cards for the extent of this knowledge.)

Follow-up and Evaluation (any of the following may be useful):

1. Reassemble the class as a whole and have each group present their solutions to specific ethical problems and comment on the reasons for their decisions. Allow students from other groups to ask questions and make comments.

2. For homework have students select a bioethical problem from a newspaper or magazine article and discuss their solution to the problem.

3. Make up a test/quiz to evaluate the ability of the student to apply the techniques used in the exercise.

Teacher Background:

In 1986 the first published reports of the use of fetal tissue transplants in the treatment of Parkinson's disease focused attention on the potential social and economic impact such use of fetal tissues may have. These transplants, performed in Mexico, Sweden, and England, were intended to implant fetal dopamine secreting stem cells into the substantia nigra of patients whose own dopamine secreting cells had degenerated. Since fetal cells do not carry marker proteins they do not initiate an immune response in the host and are, therefore, capable of being incorporated into the host's body and of functioning as normal cells in the host - i.e.: as dopamine secreting cells.

The use of fetal tissue in therapeutic procedures raises many ethical issues. Indeed, the very source of fetal tissue, abortion, could become part of an enlarged discussion of fetal tissue transplantation. Obviously, such consideration would result in diverting the discussion from focusing on the basic issue. In a set of recommendations published in 1988 by a NIH panel on Human Fetal Transplantation Research, the panel wisely sidesteps the issue of abortion by adopting a position that even if abortion is immoral, its immorality can be separated from the use of fetal tissue for research by the "appropriate public policy." These recommendations were used by the U.S. House of Representatives as an ethical basis for its recently passed bill H.R. 2507

H.R. 2507 attempts to address such issues as separating the influence of fetal tissue use from the decision to have an abortion, and the possibility that a potential exists for sale of aborted fetuses by women deciding to abort. This bill would have the donor sign a statement to the effect that her decision to donate fetal tissue was made independent of her decision to undergo the abortion. This statement would then follow the tissue and be available for audit by appropriate Federal or State officials. Clearly, this raises concerns for the privacy of the donor as well as the right of government to legislate morality.

Currently, 1.3 - 1.5 million abortions are performed in the United States annually. These do not all yield tissue that can be used in tissue transplant therapy. Obviously, this means that there is a finite number of abortuses of appropriate age: before surface proteins make immune response a consideration and before cells have developed a level of structural specificity that would eliminate them for transplant use. These same considerations eliminate fetal cells from tissue culture procedures. The only source of fetal cells for some transplant procedures at this time is fresh abortuses.

It would be naive to assume that successful use of fetal tissue would be confined to one procedure only. New applications would generate an increased demand for tissues and one could foresee a time when the available tissue produced in the United States could not fill such demand. Already success has been reported in the use of fetal thymus in the reconstitution of a severe combined immunodeficient (SCID) child in Italy. The resulting chimera is now 14 years old and exhibits normal immune responses even though his T cells are of fetal donor origin. This is only one of what one must assume to be a deluge of new uses of and demand for a limited resource. Looking ahead it is possible to hypothesize further demands resulting from in-utero corrective therapies that utilize fetal cells. The list will lengthen.

Given the potential for growth in demand for fetal tissues and the fixed amount of such tissue generated by legal means in this country the possibility for a black market looms. Trade in fetal tissue could impact third world nations resulting in trafficking by persons whose motives are purely profit. The whole issue of quality is a further adjunct to an increase in the demand for fetal tissue. How are recipients to be assured of getting viable tissue that will suit the therapy ? With an increase in demand for fetal tissue, who will receive transplant therapy when both a SCID patient and a Parkinson's patient need the only available cells? What criteria will be used to decide?

We have tried to raise your consciousness with regard to the social and economic ramifications of a developing field. What follows is a case study based on recent research in fetal transplantation. The accompanying questions serve as models upon which dialogue may be developed in cooperative learning groups. It is hoped that this dialogue will both help students develop an appreciation for the complexity of the ethical issues raised as well as provide a review of the anatomy and physiology of the immune system.

Note: This exercise uses information cards to help the students along and thus save time. It requires the students to recognize information that will be important to the solution of the problem and also involves all of the students in the process. For advanced students this procedure may not be necessary since they may either already know the information or may be assigned to look up the information as an extra assignment.

FETAL TISSUE TRANSPLANT

STUDENT ACTIVITY

Student Directions:

Sit in a circle so that each member of the group can easily converse with any other member. Select one member of your group for each of the following activities:

Leader - reads the story and controls the discussion.

Recorder - writes down the answers as determined by the group.

Dealer - passes out the Information Cards, continuing around the circle until no cards remain.

There are three sections to each part of this study: the Story which is a narrative that presents a situation involving the necessity to make ethical decisions, a Question section to aid you with the understanding of background material and an Ethical Discussion.

The leader first reads the Story and then continues with asking the questions. When a Question is asked by the Leader, group members should examine their Information Cards to see if they have information that will help with the answer. Those that have usable information read the information to the group. More than one card may be necessary to answer a question. Group members are not permitted to exchange Information Cards or read what other members have on their cards.

Once group members understand the background information the Ethical Discussion can attempted.

Remember:

There are always many solutions to an ethical problem. There is NO right solution. Do NOT write down what you FEEL, but what you conclude after considering who will be affected by the decision, the values involved and the relative importance of each value.

The Story:

Part A.

Dr. Burns is a medical doctor who is working in a research hospital. She has hypothesized that fetal tissue injected into a baby with severe combined immunodeficiency disease (SCID) would develop in such a way as to cure this disease.

Questions: (Use the information cards to help you answer these questions. More than one card may be necessary to completely answer a question.)

1. What is meant by fetal tissue?

2. What is an immunodeficiency disease?

3. What happens to cells as they develop?

4. What problem would be expected to occur when the cells from one person are placed within the body of another person?

5. What characteristics of fetal tissue might make it suitable for such an operation?

Ethical Discussion A:

a. What dilemma does Dr. Burns face? List all of the ethical problems that may arise as a result of this dilemma.

b. What is the range of values to be considered?

c. Examine these values in light of the situation presented and decide which should take precedence. Give reasons to support your ranking.

d. Explain why you think Dr. Burns should or should not be able to do such an experiment.

e. List additional information that you think would be necessary to know about before you choose what would be the most appropriate solution.

Part B.

Dr. Burns has had twelve years of experience in this field of research. Recently, she tested a transplant technique on 48 nude mice and found that the procedure worked in 87% of the mice. Later, the technique was successful in 72% of the operations performed on Rhesus monkeys. The Rhesus monkeys had been treated with drugs that destroyed the ability of their immune systems to operate. The fetal tissue for these experiments had been obtained from women who had abortions in the hospital where Dr. Burns works.

Questions:

6. What characteristics must the fetal tissue have for a successful operation?

7. Why did Dr. Burns test the hypothesis on animals before testing on humans?

8. Why did Dr. Burns experiment with mice before monkeys were used?

9. Why would the information gained from monkeys be more valuable than that obtained from mice? Should Dr. Burns have treated the monkeys with drugs first?

10. Why did Dr. Burns use nude mice for her experiments?

Ethical Discussion B:

f. Should Dr. Burns be allowed to experiment on animals? Give your reasons.

g. Do you think the results of the experiments with animals were good enough for human experimentation to begin? Would you require 100% success with animals first? Would you want more animals tested? What problems might prevent the testing of more animals?

h. Make two lists: one with reasons supporting the use of fetal tissue and one supporting the prohibition of the use of fetal tissue. Rate the reasons in each column from the most important to the least important. From your ratings determine what course of action seems to be the best.

i. If your mother had a SCID child, would your assessment of the situation change? What if your best friend had a SCID child?

j. Should the mother's permission be obtained for the experimental use of her fetus? Should the mother be paid for giving her fetus to the hospital for experimental use?

k. Should the mother's permission be obtained for medical use of the fetus (the curing of a disease)? Should the mother be paid for giving her fetus to the hospital for medical use?

l. Should the mother be able to name the recipient of the fetal tissue?

Part C.

Caroline is not married and is on welfare. Two days ago she had a baby, Jeff, who was identified as having SCID. That same day Marilyn Stone had an abortion because she and her husband felt that their family was big enough. Dr. Burns obtained the fetus. During many hours of delicate work she removed the essential tissue from the fetus and transfused it into the blood of SCID baby Jeff.

Questions:

11. What special care must a SCID baby have in order to remain alive?

12. What specific immunological problem do SCID people have?

13. What kind of fetal cells did the researcher use in order to make this transplant? Why are these cells necessary for an immune system to function properly?

14. Why didn't baby Jeff's body reject the injected cells?

Ethical Discussion C:

m. Explain why Dr. Burns should or should not have performed this operation.

n. Should Dr. Burns' plans for the operation have been approved by some kind of a medical review board before she tried the operation?

o. Before the operation the mother, Caroline, could not have afforded to pay for the medical costs needed to keep her baby Jeff alive. Who, then, would have had the responsibility to pay for his care?

p. List the problems that might occur if the demand for fetal tissue for operations such as SCID is greater than the amount of fetal tissue available.

q. If Dr. Burns cannot find fetal tissue when she needs it, should she search for sources outside of this country?

r. If fetal tissue is scarce, what means should be used to determine who will receive the tissue for an operation?

Part D.

The U.S. House of Representatives passed H.R. 2507 in an attempt to restore federal funding to research into transplanting human fetal tissue. President Bush appointed a panel to investigate fetal research and its ethical implications. Even though the panel recommended the continuation of fetal research with certain restrictions, President Bush continued the moratorium on such research.

Fetal research is being done in other countries and in a few private institutions in the U.S. Success has been found in the treatment of Parkinson's Disease and Alzheimer's Disease.

The hospital's Board of Review tells Dr. Burns that since the hospital is partially funded by federal money she must cease her fetal transplant studies.

Questions:

15. Why are fetal transplants useful in the treatment of Parkinson's Disease?

16. How do fetal transplants help cure Alzheimer's Disease?

17. What is meant by tissue culture?

Ethical Discussion D:

s. What options are open to Dr. Burns now?

t. List at least three reasons why President Bush would continue the moratorium on fetal transplants when the techniques could be helpful to many people.

u. Will the moratorium on the availability of fetal tissue provide opportunities for the development of a tissue black market?

v. If tissue culture of fetal tissues becomes commercialized, to whom should the tissue belong? Should the donor of the fetus receive residuals in the same way that people in the music industry do when their records and tapes are played commercially?

w. In the U.S. it is illegal to sell human organs: they are always donated to an organ pool. If fetal tissue can be maintained in a relatively undifferentiated state, and biotechnology can determine the future of these cells, does this mean that selling fetal tissue is selling human organs?

Summary:

1. Decide what you think is the most important ethical problem presented in this exercise and give at least three reasons why you have made this decision.

2. List the essential steps necessary to make an informed ethical decision.

INFORMATION CARDS

(Information to the teacher)

Each group will require a complete set of Information Cards.

Before the activity cut out each Information Card with scissors. They will last longer if they are glued to 3 X 5 cards and laminated.

References:

• Fine, Alan. " The Ethics of Fetal Tissue Transplants." Hastings Center Report 18 (June/July 1988): 5-8.

  This article clearly indicates the issues and implications that surround use of fetal tissues for therapeutic purposes. The author explores abortion issues, possible exploitation of women, possible sale of fetal tissues, and the role of society to weigh the risks and benefits of fetal tissue research. This is a useful summary article.

• Kearney, Warren, Dorothy E. Vawter, and Karen G. Gervais. "Fetal Tissue Research and the Misread Compromise." Hastings Center Report 21 (September/October 1991): 7-12.

  This reference offers insight into H. R. 2507, recently passed by the U.S. House of Representatives, an attempt to restore federal funding for human fetal tissue research (HFTTR). The authors discuss how the bill creates implications about privacy and confidentiality for a woman who opts to donate fetal tissue for research, since she would be obligated to sign a document to clarify, among other things, that the decision to undergo abortion was not for the purpose of providing tissue for research. This article clarifies ethical issues that arise from the mandates of the bill.

• Mahowald, Mary B., Jerry Silver, and Robert Ratcheson. "The Ethical Options In Transplanting Fetal Tissue." Hastings Center Report 17 (February 1987): 9-15.

  This reference provides insight into how one explores the ramifications of fetal tissue transplants, using the slippery slope metaphor. The authors contend that appropriate restrictions on fetal tissue transplantation constitute "wedges" which will facilitate crossing the slippery slope. Moreover the authors explore ethical considerations for the source of fetal tissues and moral requirements for obtaining these tissues.

• Roncararolo, Maria-Grazia et al. "A SCID Patient Reconstituted with HLA-Incompatible Fetal Stem Cells as a Model for Studying Transplantation Tolerance." Blood Cells 17 (1991): 391-402.

  This source is unique, since it discusses research conducted outside the constraints of U. S. Government policy for transplantation that is not commonly conducted. The case study cited describes the therapy which has allowed a SCID patient to survive to age 14, the age of the youngster at the time of the article. The patient received fetal tissue transplants for liver and thymus tissues from two HLA-mismatched donors. This literature is highly technical. It provides background on the immune system and discusses the cytological mechanisms apparently operating within this patient.

• Slesnick, Irwin L. and Jal S. Parakh. "Difficult Decisions: Fetal Cell Transplants." The Science Teacher (May 1990): 39-40.

  These authors provide some general background content for HFTT and focus on economic and social concerns that are raised by HFTT. Slesnick and Parakh ask four questions that teenagers and adults should explore individually and in groups. This article is a synthesis of the social and economic issues and implications of HFTTR. It will be highly useful to secondary school teachers.

  The following component of this module serves two purposes: to survey current literature which is easily accessible in local and school libraries and to show that common subscription periodicals indeed are addressing fetal tissue transplant issues and implications. The topic is a relevant one for contemporary society, as seen by this catalog of sources.

  Resources For Further Investigation:

• Carey, John and Stephen Baker. " 'Brain Repair is Possible'." Business Week (November 18, 1991): 62-63.

  This article discusses neurological treatments that have been conducted in humans using fetal tissue. Discussion of therapies under exploration in animal models is given. Included is exploration of gene transfer by a viral vector and use of genetically altered cells, two bio-technological alternatives for fetal tissue transplantation.

• Childress, James F. "Deliberation of the Human Fetal Tissue Transplantation Research Panel" in Biomedical Politics ed. Kathi E. Hanna, 215-247. Washington D. C., 1991.

  Childress outlines how the HFTTR Panel deliberated on the ten questions proposed by the Assistant Secretary of Health in March of 1988, arriving at consensus decisions in response to the moratorium that banned use of federal funds for HFTTR. He covers major topics including the process of deliberation; the moral status of the fetus; complicity, collaboration, and cooperation in the "evil of abortion;" ramifications inherent in abortion decisions; economic implications of HFT procurement. Childress was a participant on the HFTTR Panel. He offers a thorough review of the deliberative process that leads to policy recommendations.

• Cullton, Barbara J. "Needed: Fetal Tissue Research." Nature ( January 23, 1992): 295.

  This article summarizes the U. S. government position on fetal tissue transfer research during the Reagan and Bush administrations and gives an overview of fetal tissue research that has been conducted in Sweden, Britain, Mexico, and the U. S. The author holds that committees of ethicists in Britain and the U. S. have developed policies that offer respect for human fetuses and promote biomedical advances. She contends that the government should not stand in the way of progress.

• Ezzell C. "Fetal Tissue: A Hope for Huntington's?" Science News (February 3, 1990): 308.

  Ezzell discusses a fetal tissue transfer conducted in Mexico to ameliorate symptoms of Huntington's disease. The author offers criticism from an American physician who contends that the Mexican results may not be attributed to the original experimental design. Discussion of transgenic tissue transfers between rat donors and monkey models is reported. Discussion of plastic-coated fetal cells to treat Parkinsonian induced disease in rats.

• Freundlich, Naomi. "New Hope for Neurotransplants." Business Week (July 23, 1990): 69-70.

  The author discusses the first fetal tissue transplant conducted in the U.S. to treat Parkinson's disease (November, 1988). She summarizes controversies about fetal tissue transplants and attempts to find alternatives to FT transplantation, to, for example, reduce the need for securing multiple fetuses for a single transplant procedure.

• "Grafts for Huntington's--Too Much Too Soon?" Science (November 22, 1991): 1108-1109.

  This report criticizes the bold treatment of a Mexican Huntington's patient because animal model research did not precede this case.

• Hamilton, David P. "OTA Quietly Backs Fetal Tissue Work." Science (October 12, 1990): 201.

  The author offers an overview of options cited by OTA for Congressional approval relative to use of fetal tissue for transplantation.

• Harrelson, Walter. Commentary on "Deliberation of the Human Fetal Tissue Transplantation Research Panel" in Medical Bioethics ed. Kathi E. Hanna, 255-257. Washington D. C., 1991.

  The author's comments include a criticism that the HFTTR Report failed to clarify and restate the issues with which it was charged. He holds that a clear reinstatment of the terms of HFTTR would have proved useful to persuade administrators and political leaders to view the issues of this kind of research in a more open-minded manner.

• Hollister, Anne. "Who Gets to Play God?" Life (February 1992): 50-56.

  The author provides case studies where FTT has been used for successful prenatal treatment of Hurler's syndrome, as well as Parkinson's disease and diabetes in adult patients. She offers a report on the FTTR Bill that passed the U. S. House in July of 1991. The Hurler's syndrome case offers insight into how a family morally opposed to abortion agreed that fetal tissue transplantation was appropriate therapy for their unborn child.

• King, Patricia A. Commentary on "Deliberation of the Human Fetal Tissue Transplantation Research Panel" in Medical Bioethics ed. Kathi E. Hanna, 249-254. Washington D. C., 1991.

  King criticizes the charge given the HFTTR Panel. She holds that the 10 questions were framed in the context of the abortion issue. She suggests that one properly framed question would have generated deliberations that would have generated a stronger report.

• Kolta, Gina. "Miracle or Menace?" Redbook (September 1990): 174-176.

  The author surveys the current status of FTTR and FTT policy. She charges that privately funded research is suspect, regarding the sources of fetal tissues. She discusses economic issues that surround supply and demand of tissues. She also raises the issue of a potential black market.

• Marx, Jean. "Fetal Nerve Grafts Show Promise in Parkinson's." Science (February 2, 1990): 529.

  This article is a survey of the status of FTTR. It summarizes the potential use of fetal neural grafts for Parkinson's patients, compared to adrenal implants, for example.

• Nolan, Kathleen. "Genug ist Genug: A Fetus is Not a Kidney." Hastings Center Report (18 December 1988): 13-19.

  Nolan's article raises the reader's level of consciousness by comparing the status of fetal tissue as donation and the status of fetal tissue as gift. She contends that medical research should be allowable within a context of ethical considerations of the fetus' status. She proposes using surgically removed ectopic pregnancies as the most ethical source of fetal tissues.

• Post, Stephen G. "Fetal Tissue Transplant: The Right to Question Progress." America (January 12, 1991): 5-12.

  The author discusses why the use of fetal tissue for research is a moral dilemma. He looks at the issues from social, economic, and medical perspectives, clearly stating that there are no "quick answers" for use of fetal tissues for enhancing either lifespan or the quality of life.

• Robertson, John A. "Rights, Symbolism, and Public Policy in Fetal Tissue Transplants." Hastings Center Report (18 December 1988): 5-12.

  The author discusses the relationship between the act of abortion and the procurement of tissues; commercialization of fetal tissues; retrieval costs; and the rights of mothers to donate tissue. He suggests that proper attention to ethical concerns will help to facilitate the need for progress in medicine.

• Thompson, Dick. "When Abortions Save Lives." Time (April 6, 1992): 52-53.

  Thompson offers an overview for the debate on whether fetal tissue transplants should be conducted. He provides an update on which specific tissues might be used to treat various diseases. He holds that provisions for appropriate controls on FTTR are in place and the ban can be justifiably lifted.

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