In this paper, we explore how the definition of life takes on an essential character in the ethical debates around health technologies, with life thus being manufactured in the tensions and conflicts around the use of such artefacts and devices. We introduce concepts from science and technology studies (STS) to approach bioethics, overcoming the dualistic conception that separates the natural and the technological and questioning the dominant rationality that divides life into dualities. Drawing on two research projects in which we (...) have been involved in recent years, one regarding biobanks and the other regarding social care robots, we explore how the ethical discussions about biobanks and robots imply particular notions of life. We argue that the contemporary epistemic category of life is a manufactured life in which various rationalities coexist: one rationality based on a separation between the technological and the human, focused on pragmatism and functionalities that tend towards a dualized notion of life divided into qualified and non-qualified life, and another rationality based on a non-essentialist ontology, focused on the mediating role of health technologies, that entails a distributed life appearing as a precarious effect of a network. Each of these rationalities allows the emergence of different issues and ethical concerns, thus enriching the bioethical debate. (shrink)

BackgroundHuman biological materials are usually stored for possible future use in research because they preserve valuable biological information, save time and resources, which would have been spent on collection of fresh samples. However, use of these materials may pose ethical challenges such as unauthorized disclosure of genetic information, which can result in dire consequences for individuals or communities including discrimination, stigma, and psychological harm; has biosecurity implications; and loss of control or ownership of samples or data. To understand these problems (...) better, we evaluated the extent to which tuberculosis (TB) clinical research protocols that were used to collect and store biological materials for future use conform to the requirements stated in the Uganda national guidelines for research involving humans as participants.MethodsThis was a retrospective review of TB clinical research projects approved by the Uganda National Council for Science and Technology (UNCST) from 2011 to 2015, to examine whether they fulfilled the requirements for ethical collection and use of human materials. Data were abstracted through review of the project protocols using a template developed based on the informed consent and the Materials Transfer Agreement (MTA) requirements in the national guidelines.ResultsOut of 55 research protocols reviewed, most of the protocols 83.6% had been used to collect the stored samples (sputum, blood and sometimes urine), 28% had a section on specimen collection and 24% mentioned ownership of the biological materials. With respect to review of the consent forms used in the studies that stored materials for future use, only 9% of the protocols had a separate consent form for storage of materials, 4.5% of the consent forms explained the risks, 11.4% explained the purpose of the study while 6.8% mentioned the place of storage for the collected materials.ConclusionMany of the studies reviewed did not meet the requirements for collection and storage of biological materials contained in the national guidelines, which indicates a need to additional training on this topic. (shrink)