Monday, July 09, 2007

BMJ "head-to-head" piece on genetic privacy

The BMJ has a "head-to-head" debate on genetic information and privacy (though it is framed as a debate about ownership of genetic information, which I think is mistaken). The first contribution, from Anneke Lucassen, is here and she argues that family members should have access to the results of DNA analysis. Here is a sample:

Where genetic information points to an intervention that would decrease the morbidity or mortality from a disease, taking an individual ownership stance could lead to harm in others. Take the following analogy. A company identifies traces of a contaminating, toxic substance in a batch of tinned beans after one woman develops symptoms. The woman owns her contaminated tin but does not own the other tins in the batch, which have the same chance of causing illness in others. The woman is entitled to privacy and patient confidentiality but cannot say that she does not want others informed of the danger; nor can she prevent disclosure on the basis that she owns the information about the poisoning.

....In conclusion, this debate is more about privacy than ownership, but if anyone is to own genetic information it has to be all those who have inherited it. More importantly, it must be available to all those who might be at risk. Methods for sharing information need to be sensitive and relevant, but today's increasingly individualistic modern medicine must find ways of facilitating this. It should not be denied because of a narrow view of information ownership.

Angus Clarke weighs in on the other side of the debate here. Here is a sample from his argument:

Those who argue that genetic information belongs to the family because their genes are shared are guilty of the naturalistic fallacy—that "is" implies "ought." I am not seeking to deny that family members have mutual obligations and should be prepared to share important medical information with their relatives, including genetic test results, as they usually do.

Two particular problems arise: firstly, when an individual fails to pass potentially important information to his relatives, such as the fact that he or his child has a serious genetic condition that may be present in other family members; and, secondly, when someone forbids health professionals to release or use genetic test results to provide more accurate or relevant medical advice to her relatives. These are very different types of information.

The first issue relates to the tension between the wish of some people to keep secret some of their medical history and their simultaneous obligation to disclose it to others, when it may be important for those others to find out about it. This is not specific to genetic issues but applies to sexually transmitted diseases, some other infectious diseases, and certain other environmental hazards such as chemical or radioactive contamination. Affected people are obliged to disclose such risks as soon as they realise that they may be a danger to others. If they fail to perform this duty, health professionals may have a duty to warn others instead. In many jurisdictions, legislation forces doctors to disclose information concerning some infectious diseases and also, in relation to driving, personal information about epilepsy and other potential problems.

....In conclusion, I suggest that genetic information should be regarded as private and personal; to treat it as if it were owned in common by a body as vague and ill defined as "the family" is flawed. In the case of known disease causing mutations, however, the genetic information can be argued to belong to the laboratory or the health service that generates it and not to either the individual or the family.