Biobanks and feedback

摘要: ‘Genes now tell doctors secrets they can’t utter’ was the dramatic title of New York Times article from August 2012 that described problem incidental findings in genetic research. Indeed, issue whether or not to disclose significant information participants research generally do expect it, is a much-discussed topic medical ethics and journals has spilled over into general media. The right know discussion relation biobank almost entirely dominated by so-called ‘incidentalome’ debate. Incidental are well-known phenomenon clinical care where, for example, radiologist might find something unexpected an image addition she looking for. Genetic research, which often based on collections, similarly faced with such when researchers stumble upon DNA that, while aim itself, be potentially very relevant donors. But it have been relatively straightforward contact patient patient’s physician regarding finds, matter much more complicated far removed (both institutionally geographically) biological owners mostly anonymized samples. possibility disclosing unplanned, yet important donors raises numerous scientific, ethical, legal practical issues. Leaving aside aspects, this chapter gives overview these challenges situates debate within larger, long-anticipated personalized medicine. I will start back at debates we had ten fifteen years ago biobanks potential feedback then proceed discuss recent arguments context population other large-scale genomic