Who should genetic information belong to?

07/15/04

Genetic information: a joint account? BMJ Volume 329, pp.165-167

Should the results of genetic tests be considered personal, or should health professionals be able to use them in providing health care to the whole family, ask researchers in this week's BMJ.

Currently genetic information is considered personal, with the emphasis on respect for patient confidentiality. But patients often only seek genetic testing because of their family history, so results could more appropriately be viewed as necessary information for treating the whole family, write the authors.

The current "personal account model" emphasises patient centredness in medicine. Under this model, an individual patient's information is kept confidential unless there is a strong reason for it to be disclosed, eg serious harm to a relative.

However, this approach means that relatives can miss out on important information and health care, say the authors. Instead genetics could adopt a "joint account model", which classes genetic information as familial rather than personal, and makes it available for the treatment of other family members except where there are good reasons not to do so.

Which of these models should apply in practice? The personal model is consistent with good practice in other areas of medicine, say the authors. Nevertheless, the familial nature of genetics means that under this approach, relatives may not receive appropriate healthcare due to lack of information. In the interests of justice, they argue, sharing genetic information should become routine, except in special circumstances.

Changing to a joint model is controversial, but where there is no risk of serious harm to patients or their relatives, it would extend the benefits of testing to the whole family, they conclude.

Source: Eurekalert & others

Last reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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