William Head, a victim of leukemia, is suing the University of Iowa for the name of a woman who offers him the possibility of a bone marrow transplant, his only "ray of sunshine."
The university is fighting Head's tragic case because Iowa believes it represents a threat to the confidentiality of hospital records and could "irreparably damage" future programs.
The novel legal case, argued before an Iowa state district court judge this week, could have far-reaching implications for the conduct of medical research and the protection of subjects of human experimentation.
It raises new ethical problems about voluntary choice in the donation of human tissues and organs and the degree to which a person can be pushed to be a good Samaritan.
A victory by Head could have "disastrous impact" on research, says Arthur Caplan, an expert on ethics at the New York Hastings Center, but the dilemma it poses is "morally tragic."
Caplan said he fears such cases will occur with increasing frequency because of "our medical ability to transfer tissues between human beings. The issues involved in bone marrow transplants are also paralleled in transplantation of kidneys, corneas, lungs, livers, and hearts."
The case began with a call from Head, 27, to the University of Iowa Hospitals and Clinics' bone marrow transplant program. The unusual program can draw on a computer record of the tissue types of individuals who might be candidates for the experimental therapy.
In leukemia patients, treatment to kill the cancer cells also wipes out the crucial bone marrow, which produces blood cells. A bone marrow transplant requires the extraction of marrow from the pelvis of a healthy donor, followed by its insertion into the leukemia patient in an attempt to restore production of normal blood cells.
It is a complex procedure that requires careful matching of tissues in an attempt to avoid rejection of the implant, and has been most successful with twins or close relatives of the patient.
In recent years, however, doctors have been attempting to match unrelated donors. While work is progressing rapidly, the head of Iowa's program says that only about six unrelated bone marrow transplants have been performed on leukemia patients nationwide. All have died within a few months.
The first hurdle, however, is finding a donor.
When Head failed to find a match in his own family, he turned for help to the few hospitals around the country with extensive tissue banks. He contacted the University of Iowa, and was later told by a physician's assistant that there was one candidate who, with further testing, might be a "perfect match."
The chances of finding an unrelated donor in the general population can be as slight as 1 in 10,000, according to Iowa's medical experts. Head's petition to the court maintains that he tried the four available tissue banks in this country and found only one possible candidate.
But when the university contacted the potential donor to ask if she would be willing to participate in its program, she said no. Thus far, her identity has remained secret, although Head's lawyer told the court that the woman had been tissue-typed for a blood donation for a son dying of leukemia and has since moved out of state.
"At first it was a ray of sunshine in an otherwise dismal period in my life. At the same time, it was like dangling a carrot in front of the mule," Head said in an interview.
Head decided to fight the university in court. His Cedar Rapids lawyer, Tom Riley, is asking that the name of the potential donor be turned over to him or the court so the woman can be contacted again and given more details about Head's need for her help.
Head, who is from Loranger, La., and is the father of a 4-year-old daughter, says he was stricken with acute leukemia in December, 1980, in his senior year of college. Since then, he has fought the disease with varying success.
Twice his leukemia has gone into remission. But shortly after he sought a bone marrow transplant he again suffered a relapse and says he has spent the last two weeks undergoing chemotherapy at a Houston cancer center.
Head's battle against the disease has prevented him from attending the hearing this week in Iowa City before Johnson County District Court Judge L. Vern Robinson. Head wanted to make the trip, but decided against it when a blood count showed his disease-fighting capacity was dangerously low.
Robinson is expected to reach a decision soon, but the case is likely to be appealed to a higher court.
Caplan, one of the expert witnesses called by Iowa Deputy Attorney General Brent Appel, said that over the last decade the federal government has moved to protect subjects of human experimentation from being made unwilling or unsuspecting participants in "concentration camp medical experiments."
In addition, each institution is required to justify human experimentation to an "institutional review board," or panel of medical and ethical experts that serves as the "conscience of the hospital," says Appel.
In the Iowa case, the panel had approved a general letter for soliciting bone marrow donors that tells them it would be "an opportunity to possibly help another person in a very special way," but does not present specific cases. The letter says that the donation "would take a few days of your time and is uncomfortable, but has negligible risk. Your bone marrow is a renewable organ."
When the controversy over Head's request erupted, the panel considered whether the potential donor, who was sent the letter and then telephoned, should be contacted again.
She had said she was not interested in participating in the program "at this time" and, when asked if she ever would participate, said, "Well, if it was for my family, yes; otherwise, no," says Appel. It was decided, he says, that it would be "unduly coercive" to pursue the matter further.
But Riley, Head's lawyer, calls it an "innocuous letter" and contends the prospective donor should be told there is a "real live person who could benefit." In addition, he argues that the university violated its own rules by letting Head know there was a potential donor before getting her permission.
Riley is seeking the woman's name under the state freedom-of-information law, an approach that Iowa's attorneys argue could open other private records to public scrutiny.
Ethicist Caplan sees a worst-case scenario in which "anytime anybody gets leukemia they find a person who matches, and camp outside their door for the rest of their lives."
Riley says that if the name is made available, his client would not place "undue pressure" on the donor or sue her if she declined to help him. Experts say the courts have generally ruled that no person has a legal duty to aid another person, supporting a Pittsburgh man's refusal to donate bone marrow to his critically ill cousin.
Head said he hopes that, if he wins, the name will be handled by the court and kept from him.
"I would be restrained right now," he said, "but who knows, if this was my last option."