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Medical Meeting Reports

American College of Surgery Clinical Congress

October 10-15, 1999


ETHICS DEBATE: SHOULD THE FAMILIES OF PATIENTS WHO HAVE HEREDITARY NONPOLYPOSIS COLORECTAL CANCER BE INFORMED?
font=>By Paul Recchia, Ph.D.

A colloquium on ethical issues in genetics, moderated by Bernard Langer, MD, debated ethical implications of genetic testing on various diseased patients. One such case study was about a man who tested positive for hereditary nonpolyposis colorectal cancer. The question the moderator raised was whether the family of this man should be told about his condition because various other family members might have genetic propensity for the same illness.

The Rules of Disclosure

Ira Kodner, MD, Washington University School of Medicine in St. Louis, MO, argued that physicians are obligated to disclose that a patient has hereditary nonpolyposis colorectal cancer to the family of the patient. He advised first trying to convince the patient to inform those at risk in the family. However, physicians are legally privileged to disclose genetic information to the relatives if familial implications arise. The rights to disclosure are upheld in the legal duty to warn against communicable diseases, gunshot wounds, child abuse, and other threats to innocent people. Admittedly, genetics differ because the relatives' risk is predestined: the patient's genes do not change the genetic makeup of his or her relatives. So, in the view of Dr. Kodner, without a new definition of the patient that includes the family, physicians are not obliged to disclosure, but can disclose if the physician feels ethically bound. This right of the physician to inform the family is protected by law and the most diplomatic way to handle this may be through a genetic councilor.

The Rules of Confidentiality

In opposition, Thomas Richard Russell, MD, University of California, San Francisco Medical School, argued that the sanctity of the patient-physician relationship must be preserved. The doctor can not, in his opinion, violate confidentiality of patients. Deceit is not an issue because the doctor is telling the truth to the patient, but only the patient, not the family. He feels educating the patient through genetic counseling and letting the patient make the decision to disclose or not is more important than violating patient confidentiality.

Discussing the Gray Area Between

The issue comes down to the gray area between the rules of disclosure and the rules of confidentiality: genetic information should be protected but not absolutely. There are exceptions: when failure to disclose may lead to harm, when harm is likely and foreseeable, when at risk relatives can be identified, and when the disease is preventable and treatable.

The panelists, composed of French Anderson, MD, Abdallah Daar, MD, Eric Jeungst, PhD, and Mark Sieger, MD, debated this gray area. Dr. Abdallah felt where there is the potential for damage to a third party, that is an automatic green light, and the physician must tell the family. Dr. Jeungst raised the question: "What benefit does holding such a secret have to the patient?" For example, in the operating room, keeping secrets about a patient's condition would make no sense, and many health care workers need to have access to a patients records, so the need for confidentiality may not be as big an issue as it sounds. Dr. Anderson retorted that telling relatives is a wider breech of confidentiality than telling health care workers in a hospital setting. Dr. Seiger claimed the advantage to disclosing the information to the family is they can be tested for their genetic propensity for the disease and this helps the patient by relieving his or her concern for loved ones. The panelists concluded that there appears to be no correct answer as to the question of telling the relatives. Dr. Anderson said the decision rests on the ethical interpretations of the individual physician.

For professional correspondence, please contact Dr. Richard Langer at blanger@compuserve.com, or Dr. Ira Kodner at ijkodner@aol.com.

Ortho Biotech

Funded through an unrestricted educational grant by Ortho Biotech.



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