‘Science is really needed—that’s all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden

Abstract

In Vasterbotten County in northern Sweden a start-up biotech company has recently gained all commercial rights to one of the worlds largest population based research biobanks. The biobank and the company have publicly emphasized that all donors have given their informed consent to participate, but within the academy it has become debated whether people have been adequately informed. Based on anthropological fieldwork it is shown that many people do not read the information provided. The data do not, however, suggest that donors themselves perceive a lack of information. This article endeavours to make meaningful the apparent lack of interest among donors in the information they are offered. It is argued that the donation of blood should be analysed in its social and historical context rather than as a response to rational assessment of information of research purposes. It implies a conceptualisation of agency more aware of the intersubjective nature of moral negotiation than usually implied in studies of informed consent.

Ethics, Space, and Somatic Sensibilities: Comparing Relationships between Scientific Researchers and Their Human and Animal Experimental Subjects

“…However, if we are to pay attention to how ethics is done in practice with sentient beings, then we also need to look beyond the dedicated spaces of the ethics committee (and the responsibilities set out in the CRN competencies) to understand how ethical practices and notions of care and responsibility infuse everyday experimental practice. So far this is a familiar move to many of those who have critiqued the informed consent procedure, drawing attention to how informed consent is rarely the free and autonomous decision it was designed to be (Boulton and Parker, 2007;Dawson, 2003;Greenhough, 2007;Hoeyer, 2003). Here we wish to go further in emphasising how consentöor at least cooperation with the experimental processömight be nonverbal (see also Hoeyer, 2003) and dependent on the creation of environments where subjects remain articulate in the broadest sense.…”

“…So far this is a familiar move to many of those who have critiqued the informed consent procedure, drawing attention to how informed consent is rarely the free and autonomous decision it was designed to be (Boulton and Parker, 2007;Dawson, 2003;Greenhough, 2007;Hoeyer, 2003). Here we wish to go further in emphasising how consentöor at least cooperation with the experimental processömight be nonverbal (see also Hoeyer, 2003) and dependent on the creation of environments where subjects remain articulate in the broadest sense. This in turn places new kinds of obligations on the experimenter to develop their competency in sensing the ways in which they and their sentient subjects react to the experimental environmentöwhat Haraway (2008) might term response-abilities.…”

“…Correspondingly, bioethical debate also tends to focus on the underlying principles that shape the use and recruitment of human (1) volunteers and associated codes and procedures, such as ethical review and informed consent. See, for example, bioethical analyses of informed consent procedures (Boulton and Parker, 2007;Dawson, 2003;Hoeyer, 2003), the use of placebo (Ehni and Wiesing, 2008); the use of inducements to recruit participants (Edwards, 2006); equipoise (Ashcroft, 1999), and balancing patient risk against the benefit to society (van Ness, 2001). Social scientists and anthropologists have also begun to question the autonomy of volunteers' decision-making processes, arguing that wider social, political, and economic conditions influence a decision to join or refuse participation in a clinical trial (Petryna, 2006;Rajan, 2007).…”

Solidarity beyond the grave: Yielding organs in a Nordic welfare state

“…Donating body parts postmortem is linked to wanting to be of use and fulfilling an obligation as a citizen, to 'do one's share' (Hoyer 2003). As a citizen of a welfare state, one wants to contribute, not only to saving a fellow citizen's life, but also to advancing biomedical research and interventions that will serve the common good, including oneself .…”

Potential harms, anonymization, and the right to withdraw consent to biobank research

“…In Swedish biobank research, many patients express their willingness to contribute to research because they sense a duty to do so. 14,15 A perceived duty to contribute may result in mandatory inclusion of personal data or biological samples in registers and collections. Our deduction is more modest: Those who have consented to the use of their biological samples in research should not be allowed to hinder that research later without providing valid reasons as to why they have changed their mind.…”