The use of diagnostic collections of DNA for research: Interviews at the eight Belgian centers for human genetics

Abstract

The attitudes towards the reuse for research of biological samples that were gathered in a diagnostics context have changed over the last years. A few decades ago, people would not hesitate to use such samples without explicit consent. Then, in conjunction with a move towards a stress to personal autonomy in bioethics, many would argue that written consent for such secondary use is necessary. Not much is known about the actual practices with regard to this subject. We have interviewed spokespersons of all eight Belgian centers for medical genetics, and have found that they would all adhere to the latter stream of thought. As such, they would not use diagnostic DNA for research purposes without written consent. Recently, however, international guidelines have moved towards the concept of presumed consent for diagnostic samples. There is agreement that patients and donors should be informed about possible research uses, and should be given the opportunity to opt out, but there is no need for explicitly written consent to be able to use these samples. Extracted DNA may fall under the same regime as other tissue that is gathered in a diagnostic or surgical context in university hospitals. Such policy satisfies both the requirement of respect for donor’s autonomy as well as the requirement of using research resources sensibly and is backed by international guidelines and opinions.