Abstract
With the introduction of whole genome sequencing in medical research, the debate on how to handle incidental findings is becoming omnipresent. Much of the literature on the topic so far, seems to defend the researcher’s duty to inform, the participant’s right to know combined with a thorough informed consent in order to protect and secure high ethical standards in research. In this paper, we argue that this ethical response to incidental findings and whole genome sequencing is appropriate in a clinical context, in what we call therapeutic research. However, we further argue, that it is rather inappropriate in basic research, like the research going on in public health oriented population based biobanks. Our argument is based on two premises: First, in population based biobank research the duties and rights involved are radically different from a clinical based setting. Second, to introduce the ethical framework from the clinical setting into population based basic research, is not only wrong, but it may lead to unethical consequences. A Norwegian population based biobank and the research-ethical debate in Norway on the regulation of whole genome sequencing is used as an illustrative case to demonstrate the pitfalls when approaching the debate on incidental findings in population based biobank research.
Highlights
An incidental finding in medical research is defined as “a finding concerning an individual research participant that has some potential health or reproductive importance and is discovered in the course of conducting research but is beyond the aims of the study” [1]
Incidental findings appear in a lot of different research projects where various medical technologies are used, for instance MRI, the hottest debates have taken place with regard to genetics and genomics in general, and whole genome sequencing in particular
The ethical aspirations are backed with juridical norms; in most countries the doctor has a duty to inform the patient about her condition, the patient has a corresponding right to know, the doctor has a duty not to harm the patient as well as a duty to inform the patient and thereby respect patient autonomy
Summary
To open up the moral landscape of incidental findings, we should start in the clinical context. A central feature of what we will call the clinical context is for instance that there is a doctor and there is a patient where a doctor-patient relationship exists These duties can be argued to extend into genomic research when research is done in clinical contexts This follows Ravitsky and Wilfond (2007) arguments for disclosure of genomic information to research participants, for example in longitudinal family studies of serious congenital disease where often more than one member of the family are affected [3]. In cases like these there are ongoing involvement between the patient(s), his or her family and the health care system
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