Doctors face a critical ethical dilemma if they are faced with a patient who has tested positively for a genetic predisposition to breast cancer but who insists that this information is not be shared with her family. Do they break the laws of patient confidentiality, or do they withhold information that could enable close female relatives access to genetic testing and breast cancer prevention strategies? The complexities of this important issue are highlighted in a Special Report in the March issue of The Lancet Oncology.
Gareth Evans of St Mary's Hospital, Manchester, and the charity Genesis Appeal, explains why he is in favour of changing the rules about patient confidentiality. He argues that a substantial number of cases of breast cancer could be prevented, or at least detected at an earlier stage, if doctors were allowed to pass on such information directly. John Harris of Manchester University's School of Law supports his view, observing that the entitlement of one person to life is always going to be considered more important than another person's right to confidentiality.
Evans and Harris agree that there are compelling arguments to support an adjustment to the law but others remain unconvinced. Raanan Gillon of Imperial College in London, stresses that personal privacy, which is already threatened by computerised records, should not be eroded further.
The current law also has significant flexibility; although doctors cannot technically pass on medical information to relatives without permission from the original patient, they can proceed to breach legal rules if disclosure will prevent significant harm of a third party. This argument is frequently used to disclose positive HIV test results to sexual partners. However, genetic testing for susceptibility to cancer is less clear cut than the results obtained from an HIV test.
Having the mutation may mean that a close relative also has that mutation but a positive result in both cases still means that the risk of developing cancer is increased; it is not a certain outcome by any means. Some patients would also want to claim their right to not knowing they have an increased genetic risk. There is also the question of age at disclosure; would it be right, for example, to inform a 15-year old girl of her aunt's positive BRCA1 test result, or should she be told later when she can make a more informed decision about having the test herself?
The Special Report also points out that any changes in the law would have to take into account our ever-changing knowledge of genetics and risk. The decision to inform close relatives of a potential risk of a preventable condition could be made, as they would clearly benefit in the long term. But would doctors have enough justification for telling someone they may have a genetic predisposition to a condition for which there are no options for prevention? Either way, the article concludes that it would also be important to consider the implications of allowing greater dissemination of information with regard to the extra legal responsibility that this would put on health professionals and health services.
The increasing availability of direct-to-consumer genetic tests for susceptibility to many health conditions, including cancer, compounds the problems of confidentiality. Commercial tests offered within the context of 'recreational genetic testing' mean that genetic testing for increased cancer risk is possible when there is no clinical justification nor any back-up and support from genetic counsellors or trained medical professionals. There is even greater potential for genetic test results to be misunderstood and misused. The Lancet Oncology's Leading Edge editorial in December urged regulatory agencies to adopt a more proactive role and suggested that marketing of such tests should be restricted to health professionals.
David Collingridge, Editor of The Lancet Oncology, says: "We welcome this debate in to the wider access of confidential patient records because there are circumstances where lives could be saved by more timely medical interventions. However, there is a certain amount of provision in current law to allow disclosure of predisposing risks, and some genetic tests that claim to predict cancer do not generate results that justify radical treatments or even intensive screening, so subsequent disclosure of such information to third parties is not justified because lives are not demonstrably at risk. Equally, any changes in the law need to be considered carefully to prevent inappropriate use of confidential, personal information."
For Leading Edge and Feature see: http://press.thelancet.com/TLOconfidentiality.pdf
Journal
The Lancet Oncology