Current patient confidentiality laws questioned

NEW YORK (Reuters Health) - A special report published in the March issue of The Lancet Oncology focuses on the ethical dilemma of whether a physician has an obligation to inform family members if a patient tests positive for a genetic predisposition to breast cancer but who insists that the information not be shared.

Informing the family would allow them the opportunity to consider screening and perhaps take steps to prevent the disease or passing the defective gene to their unborn children. Current patient confidentiality laws prevent physicians from informing family members if the patient does not consent to sharing the information. Some UK researchers believe it may be time to change the law.

Gareth Evans, of St. Mary's Hospital, Manchester, UK, said that when he and his colleagues informed relatives of patients carrying the BRCA mutation that they may want to be tested to see if they are carriers, a significantly higher percentage took up the offer than when patients were left to inform family members on their own (56% versus 36%).

"This latter option certainly preserves the patient's right to confidentiality; a patient need tell no one if he or she so wishes," Evans said. "But it also means that many people will never be informed, or properly informed, of the possible risk to their health, and many will die of breast cancer they need never have developed had their doctors been able to warn them."

John Harris, of Manchester University's School of Law, agrees that there are compelling arguments to adjust the current law. He argues that the entitlement of one person to life will always be more important than another person's right to confidentiality.

There is significant flexibility in current UK law, according to the authors. While physicians are not technically allowed to pass on medical information to relatives without permission from the patient, there are certain justifications for breaching this law. This is true, for instance, if disclosure will prevent significant harm to a third party. This argument is often used in cases of HIV infection. However, genetic testing for susceptibility to cancer is less black and white.

"The risk posed by an adverse BRCA1/2 mutation is serious, but not imminent (usually), so that there is usually time available to try to persuade the patient that it would be better to allow their relatives to be warned," Richard Ashcroft, of the University of London, explains.

"This is obviously difficult, but we don't ordinarily force one relative to tell another about something which is in the second relative's interest to know," he said. One also has "the right not to know one's genetic risk."

Raanan Gillon, of Imperial College London, UK, argues that personal privacy, which is already threatened by computerization, should not be eroded further.

The Special Report stresses that any change in the current law would need to consider the ever-changing knowledge of genetics and risk. In addition, it would also be important to take into account the implications of allowing dissemination of health information in terms of the extra legal responsibility this would put on health professionals and health services.

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