27 November 2008
Issues concerning peoples’ rights in relation to their genetic information are becoming increasingly important not least due to the burgeoning market for direct-to-consumer genetic tests. The Australian government is considering banning these products due to concerns about the interpretation of test results, especially for serious genetic conditions and feel that they would cause more harm than benefit [Finkel E (2008) Science 322 (5905): 1177]. Others might argue that individuals should have the right to decide if they would like to obtain genetic information directly or not, especially since the harms and/or benefits of such information will vary on an individual basis.
Regardless of what an individual patient may consider is reasonable, professional groups such as medical professionals or researchers may additionally be required to comply with sector specific guidance as to who may have access to genetic information or how best to balance their obligations to individuals and other interested parties (e.g. relatives). Some of these issues have been addressed by the UK’s Human Genetics Commission in its report on genetic information, where it makes recommendations on the use of genetic information in clinical practice and medical research, and for non-clinical purposes such as insurance, employment, forensic databases and family relationship testing (see previous news).