“We would tell people, ‘Hey, if you do this, we think there is a chance you could be sued,'--and I don’t think we’re stretching it to say that,” he said.
But after months of debate over how best to handle students with disease, one point became clear: a few parents had a different idea of where the emphasis should lie.
As Herbert Varney, the assistant superintendent, recalls, they raised the same question at every public hearing:
“What about us? We have a right to know if our child comes in contact with a child who has AIDS.”
Looking back on the process, Mr. Varney says that the issue of confidentiality was “one of the hardest to deal with.”
“What you’re really dealing with,” he says, “is the public’s right to know versus the individual’s right to privacy.”
And it is that dilemma school officials nationwide are facing as they confront the inevitable reality that someone with AIDS—a teacher, a pupil, or a staff member—will pass through their school system. Armed with uncertain legal requirements and medical advice that deals only with the dangers of transmission, they must answer a question with deeply human consequences: Who should know when someone in the classroom has AIDS?
To date, those who have tackled the ethical conundrum have tried a variety of solutions.
‘How Many Know?’
In Cabell County, district officials decided on a plan that has, with some variations, found favor elsewhere.
The identity of any AIDS student will be revealed to a special team of professionals formed to make the decision on whether or not the child should be allowed to remain in school.
Team members would include the child’s doctor, the county health officer, a doctor chosen by the school board, the school nurse, the principal, and the child’s teacher.
The superintendent would decide, on a case-by-case basis, whether to inform anyone else.
To help him make such a decision, Cabell County school officials plan to ask the parents of children with AIDS to fill out a questionnaire. The last question on the form is, “How many other people know of your child’s medical condition?”
“If the answer is a large number of people,” Mr. Varney said, “we think that would give us some indication as to which direction we need to go.”
Pittsburgh Experience
In contrast, only three people in the Pittsburgh school system were told last month the identity of a teenager there who was diagnosed as having AIDS. School officials have also refused to reveal the age and grade-level of the student or the school he attends.
“His principal and his teachers don’t even know,” said Patricia Crawford, a district spokesman.
The officials did, however, make a public announcement that a “responsible young man with AIDS” was attending a Pittsburgh high school.
“We had a small number of parents calling up wanting to know who the student was,” Ms. Crawford said. “When we said we couldn’t tell them, they said, ‘Then why did you go public at all?”’
The answer, Ms. Crawford said, was that rumors about the boy’s condition had begun circulating a week before school authorities learned of the diagnosis.
“We felt that, if this information got out by rumor, it would be worse than if we put it out ourselves,” she explained.
She added that officials had felt no need to inform additional school personnel, since district employees already had been instructed to treat all students as if they had the disease. That means, she explains, taking precautions when cleaning up vomit, carefully disposing of bandages, and, in some instances, using rubber gloves.
A ‘Right To Know’?
Meanwhile, a Columbus, Ohio, AIDS policy favoring the protection of student-victims’ identities has drawn sharp—and very public—criticism from Duke Hobson, a school-board candidate.
“I, as a parent, have a right to know if my child is coming in contact with someone that has been diagnosed as having the AIDS antibody or the disease,” he said, adding that such knowledge would give him the option of “placing my child in a private school, or asking to have my child’s schedule changed.”
Under the Columbus plan, only the student’s teacher, principal, school nurse, school physician, and superintendent would be told he had been diagnosed as having AIDS.
Mr. Hobson’s views notwithstanding, school officials who have dealt with the dilemma say that sentiment favoring the adoption of policies that specifically protect the privacy of AIDS victims and their families is growing.
The well publicized troubles of the Ray family in Arcadia, Fla., provided a poignant lesson on the possible dangers of publicly announcing the names of AIDS victims, the experts say, and has tilted the balance of public opinion in favor of guarding confidentiality.
The Rays, whose three sons tested positive for the virus that causes AIDS, successfully fought their hometown school officials in court last summer to force the boys’ admission. But in the process, they endured social ostracism, threats of violence, and public protests.
“It’s tough enough having a fatal disease, the least that school officials can do for these children is save them from becoming social outcasts,” said Judith Areen, a Georgetown University law professor who has also taught courses in medical ethics.
“I come down saying ethics suggest we do have to protect the confidentiality of the child,” she said.
Federal Protections
Federal and state laws, however, are less certain on such matters, according to Wendell L. Willkie 2nd, general counsel to the U.S. Education Department.
He said the federal Family Educational Right to Privacy Act, passed in the 1970’s, protects all student records from “unconsented disclosure.” It also makes exceptions, he added, for “common sense, sound, educational or medical reasons.”
“For example,” he explained, “you might want a teacher to know that a child in the class has AIDS—or a school nurse.”
Similar confidentiality safeguards are built into the Education of the Handicapped Act, he noted.
In applying both laws, Mr. Willkie said, courts often defer to current medical thought. And other lawyers added that, when examined in that light, parental claims of “need to know” begin to evaporate.
Current medical opinion holds that, unless they have tendency to bite or have oozing, uncoverable lesions, pupils with AIDS pose negligible risks to the health of their classmates. No reported cases of the disease have yet been found to be transmitted in a classroom setting.
On the other hand, federal law does not require school officials to inform anyone at all that a child has the disease.
“That’s not a policy that we recommend,” Mr. Willkie noted. But, he said, “in the final analysis, schools have to make these decisions on a case-by-case basis.”
Teachers Less Protected
Mr. Willkie said federal law provides fewer protections for teachers who have the disease. Neither the EHA nor the FERPA covers teachers.
Such was the harsh reality for a Clark County, Nev., teacher who informed his superiors last November that he had AIDS. With his permission, school officials then called a press conference at which they announced that a male teacher at a particular high school suffered from AIDS.
The problem, according to the National Education Association affiliate in that county, was that the teacher was one of only two male teachers at the school. And only one of the two was at work that day.
“By that evening, the news media had his name,” said Joseph Lamarca, executive director of the the Clark County Teachers Association.
“There was no reason for the district to even announce that a teacher had AIDS,” he said.
Mr. Lamarca reasons—as does the NEA—that as responsible adults who are not expected to wrestle, bite, or have intercourse with their students, teachers with the disease pose no danger to the children they teach.
In other states, laws help provide teachers with the confidentiality safeguards that may be missing in federal statutes.
Citing his state’s laws for the handicapped, for example, Attorney General James Shannon of Massachusetts recently wrote to school officials in the town of Quincy, asking them to abandon a policy that required all employees with AIDS to inform the superintendent. The Quincy School Committee complied.
Yet even when school officials4make a strong effort to protect a student’s or teacher’s identity, word has often leaked out.
Guarding Against Leaks
A parents’ group in Wagoner County, Okla., learned the identity of an 8-year-old with the disease after a school employee phoned one of the parents.
Though Wagoner administrators steadfastly refused to publicly announce the victim’s identity, according to the parent who was notified, Susan Fischer, “everybody in town knew who it was.”
To guard against such leaks, Fred Lifton, a Chicago lawyer who works to develop AIDS policies with school districts throughout the country, said he and his associates issue a warning to school employees.
“We would tell people, ‘Hey, if you do this, we think there is a chance you could be sued,'—and I don’t think we’re stretching it to say that,” he said.
So far, the tactic has worked, according to Mr. Lifton. In one school system he worked with in Wilmette, Ill., he noted, only a handful of people currently know the identify of an infected child who began attending school there more than a year ago.
School officials who breach one student’s confidentiality, he said, increase the likelihood that other parents of children with the disease will not come forward with information on their child’s illness.
In the end, Mr. Lifton and others advised, the wisest course of action for schools is to enact a comprehensive and flexible AIDS policy, publicize it, and follow it consistently.
Such policies, they said, must take into account the child’s behavior, age, medical condition, and any possible threat his presence may pose to classmates.
Districts that have not yet taken that step, according to Ms. Areen, are “irresponsible.”
