6 research outputs found
Managing incidental findings in population based biobank research :
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 researcherâs duty to inform, the participantâs 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
Peeking into the black box of privacy - biobank participants on the importance of recognition
Biobank research deals with personal information and data from blood and tissue analysis, making the
questions of legitimate recruitment of participants and handling of their data to be intimately connected
with the issue of privacy. Thus, identification of the privacy interests of biobank participants is vital to the
legitimacy of biobank projects. In this article, we ask: How do participants articulate the nature of privacy
issues in biobanking? Here we report from a focus group study on biobank participantsâ view of privacy
and consent in relation to biobank research. Based on our analysis, we found that participants viewed
privacy as a concept that describes several dimensions of the fundamental need to be recognized and
respected as an individual and as a person. Interestingly, the needs to be recognized and respected were
also viewed as the basic purpose of biobank consent
We're not in it for the money - lay people's moral intuitions on commercial use of 'their' biobank
Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: âBiological materials should not, as such, give rise to financial gainâ. Similarly, Norwegian legislation reads: âCommercial exploitation of research participants, human biological material and personal health data in general is prohibitedâ. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informantsâ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing