A 30-year-old woman has been diagnosed with familial adenomatous polyposis, an inherited condition that puts her at extremely high risk of colon cancer. Indeed, most people with this condition, if untreated, will develop the cancer by age 40.
The patient’s own mother died of colon cancer at age 32. Despite this grim history, the woman refuses to share the diagnosis with her family, including her four siblings and her husband. In addition, she does not want her two children to be tested for the genetic flaw. Researchers know that the mutant gene responsible for this disorder lies on the long arm of chromosome 5. This flaw results in hundreds or thousands of polyps, small wartlike growths, carpeting the lining of the colon. Some of the polyps will become malignant.
Something to consider:
Who “owns” the information encoded in a person’s genes? Bear in mind the fact that the rest of the family shares a common heritage with this woman.
Many respondents raised the concept of beneficence in their solutions.
Anna DelPrato of Massachusetts writes, “I was astonished and outraged that there should be any doubt as to whether or not the woman’s family should be told that they may be carrying a harmful gene.” A Georgia high school student says, “I don’t see how the counselor could just stand by and watch these unsuspecting relatives careen down a path toward a horrible death any more than I could watch a runaway train hurtling toward a kindergarten playground and not shout out a warning.”
A college student from Louisiana urges the counselor to tell the rest of the family. The patient is “placing her entire family at risk of death just to protect her pride or job.” This student, who is 18, says he speaks from experience: “I have familial adenomatous polyposis.”
Yet some readers believe the right of confidentiality remains paramount.
A Michigan college student writes, “A patient’s right to privacy has to be honored, even if family members are at risk.”
Says Kathleen M. Vyborny of Illinois, “The woman’s information does not point to any identifiable victim, and there is no near certainty that any disease will immediately develop.” Eileen Roy of California adds that “The family is perfectly able to seek testing on their own behalf if they desire it.”
On this case, the experts agreed: All would warn the family.
This troubling case pits the woman’s wish to keep her diagnosis private against her family’s right to know of their legacy, Pergament says. “As important as confidentiality is, it is not as important as a person’s life.” He would counsel the woman extensively about the need to tell the family. If she still wouldn’t, Pergament would try to find a way to notify the relatives without violating the contract with the woman.
“This patient has a moral obligation to tell her relatives,” Murray adds. If the woman still refused after counseling, Murray says her physician would be justified in notifying the family of its risk.
Caplan would also override privacy concerns in this situation. “I think there is a duty to warn if you can prevent a real harm from befalling somebody else.”
Sources: This article and reader responses appeared in Science News magazine in the November 5, 1996 and the December 17, 1996 issues. These cases were described by the organizers of the Bar Harbor ethics discussion: Clair A. Francomano of the Johns Hopkins University School of Medicine in Baltimore, Judith G. Hall of the University of British Columbia in Vancouver, Laird G. Jackson of the Thomas Jefferson Medical College in Philadelphia, and John A. Phillips III of the Vanderbilt University School of Medicine in Nashville.