4. DONATION OR COERCION?
When Jean Pierre Bosze was 12 years old (1988), he developed a rare form of leukemia, called acute undifferentiated leukemia. For a time, his body responded well to chemotherapy, a treatment designed to kill leukemic cells. But eventually the disease returned, and no other treatments were effective in slowing the progression of his disease. Soon the only option left to Jean Pierre was a bone marrow transplant, although even a bone marrow transplant was by no means a sure thing. Some experts estimated the chance that a transplant would cure Jean Pierre as less than 20%, and one thought it was more in the range of 1-5%. In addition, there was a 70-80% chance that a bone marrow transplant would cause a "graft-versus-host" reaction, which would make Jean Pierre sicker and eventually kill him. (In a graft-versus-host reaction, transplanted cells attack and destroy cells, tissues, and organs of the recipient's body.)
Despite the low chance of success, Jean Pierre's mother and father were eager to give the transplant a shot. They both volunteered to donate their bone marrow cells to him, but neither was a good match. Mr. Bosze had four other children besides Jean Pierre, a 23-year-old son, a one-year-old daughter, and a set of twins who were three-and-a-half years old. The 23-year-old son (whose mother was different from Jean Pierre's mother) volunteered to donate bone marrow cells, but his cells did not match those of Jean Pierre.
Mr. Bosze decided to ask the mother of the twins?Ms. Curran?to have the twins tested, but she refused. Ms. Curran and Mr. Bosze had never married. She had sole custody of the twins, but Mr. Bosze did visit them regularly. The twins had seen Jean Pierre twice, but they had no idea that he was their half brother.
Mr. Bosze took Ms. Curran to court in Illinois to force her to have the twins tested. Ms. Curran argued that she did not want to expose her children to the physical and emotional risks associated with anesthesia, the testing procedure (taking blood), the trauma of hospitalization, possible donation of bone marrow (which can be painful), and so on.
The lower court said that the twins should not be forced to have the tests or become donors, and the Supreme Court of Illinois agreed. The lower court judge concluded that it was not in the twins' best interest to have their blood tested and that testing them would violate their right to privacy.
No other donors were located for Jean Pierre. He died November 19, 1990.
- New York Times, 1990, November 20, B9.
- Time, 1990, September 10, 70.
- North Eastern Reporter, Curran v. Bosze, 566 N.E.2d, 1319-1345 (Ill. 1990)
- Hastings Center Report, 1995, September-October, 7-12.
Students should understand the following:
- Patient rights and the concept of informed consent
- Consent of parents or guardians to treatment in the case of children and incompetent individuals
- The role of bone marrow in the development of blood cells
- The treatment of some leukemias through bone marrow transplantation
- The biology of tissue typing
- The procedures involved in bone marrow harvesting and transplantation
- The benefits and risks to both the donor and the recipient in bone marrow transplantation
- Proposals for new policies on organ transplantation and incentives to increase the pool of donors
Suggested questions for discussion
- Parents and guardians act in the best interest of the children under their care. In this case, the custodial parent, Ms. Curran, refused to have the twins tested as donors. This testing procedure involves a simple blood test (risk is minimal). What were her reasons for refusal? Why do you believe the court supported her decision?
- Ms. Curran said she did not want the twins to be tested and become donors, because the risks associated with donating marrow were too great. The procedure for bone marrow donation includes general anesthesia, inserting a needle into the hip bone to aspirate bone marrow, and a possible later need of a blood transfusion. Additional possible risks include infection at the site of the needle, trauma of hospitalization, and post-operative pain. Would you do what she did if the twins were yours? Do you think her decision would have been different had Jean Pierre been her child?
- Parents must make decisions for their children all the time. Under what conditions is it fair to subject a healthy child to a medical procedure for the purpose of improving the health of a sick child?
- Suppose your best friend needs a kidney and you are a match. What is your moral obligation to donate a kidney? Would your obligation be different if your sibling needed a kidney? How big a risk would you accept for yourself (surgical, anesthesia, post-operative risks) in each situation?
- When a person is tested for suitability as a bone marrow donor, all information collected is entered into the national registry for bone marrow donors. This occurs even if the person agreed to donate tissue specifically to a relative. Suppose you have been tested and find out that you are not a suitable match for the family member. But, months later, you receive a call that you are a reasonable match for a complete stranger who needs a bone marrow transplant. Do you think you would agree to donate bone marrow? What factors might affect your decision? Would the decision be different from the one you made concerning your relative?
Topics for discussion/written assessment
- What is leukemia? What is a bone marrow transplant? What are the risks to the donor and to the recipient? How successful is bone marrow transplantation as a treatment for leukemia? How are bone marrow donors selected? Why do bone marrow transplants, but not most other sorts of transplants, cause graft-versus-host disease?
- In April of 1990, a baby girl was born to the Ayala family. She was their third child. She was conceived in order to try to save the life of the family's 19 year old, Anissa. Three years earlier, Anissa had been diagnosed with chronic myelogenous leukemia. Her survival depended on a bone marrow transplant. Anissa's parents and her brother were not suitable donors. Her parents decided to try a longshot. The father had had a vasectomy, but that was reversed. The mother was 43 years old. Remarkably, the baby, Marissa, was a suitable match for Anissa. A successful transplant was performed between the sisters when Marissa was 14 months old. When, if ever, is it morally acceptable for parents to conceive one child for the explicit purpose of providing a transplant for another child? Why do you think the decision the Ayalas made caused such great public concern?
- On occasion, parents place a healthy child at risk for the benefit of a sick child. Ms. Curran was asked to place her healthy children at risk for their ill half-brother. What is the justification for putting a child at risk? How does "best interest," a legal concept, differ from "substituted judgment?" Does the particular family relationship justify the risk imposed by the parent?
- What is informed consent? What is it meant to protect? How does it differ from substituted judgment and best interest? Under what conditions and to which individuals do substituted judgment, best interest, and informed consent apply?
- In 1972, one of two seven-year-old twin sisters needed a new kidney. The parents were tested but neither was an ideal donor. The parents decided that the healthy twin, an ideal match, should act as the donor. In this case, a psychiatrist said that a successful transplant "would be of immense benefit to the donor in that the donor would be better off in a family that was happy than in a family that was distressed and that it would be a very great loss to the donor if the donee were to die from her illness." What are the acceptable risks for the healthy donor when the recipient is a family member? Are they different from the acceptable risks when donor and recipient are strangers? How do the facts and the decision in this case differ from those in the Bosze Case? In what circumstances would the burdens on either the donor or the recipient be too great to justify the transplants? What are examples of "the best interests" of the donor?
- Develop a national policy for transplantation of organs and cells from live donors (kidneys, eggs, etc.) that would address the factors that contribute to coercion.
Topics for teacher preparation
- Development of blood cells, function of the bone marrow
- How the immune system works
- Leukemia, treatment, and prognosis
- Graft-versus-host disease
- Procedures involved in a bone marrow transplant for both the donor and the recipient
- Risk assessment for the donor and the recipient
- Patient rights, informed consent, substituted judgement, parental or guardian consent
- The national bone marrow registry