This essay examines issues involving personal privacy and informed consent that arise at the intersection of information and communication technology and population genomics research. I begin by briefly examining the ethical, legal, and social implications program requirements that were established to guide researchers working on the Human Genome Project. Next I consider a case illustration involving deCODE Genetics, a privately owned genetics company in Iceland, which raises some ethical concerns that are not clearly addressed in the current ELSI guidelines. The (...) deCODE case also illustrates some ways in which an ICT technique known as data mining has both aided and posed special challenges for researchers working in the field of population genomics. On the one hand, data-mining tools have greatly assisted researchers in mapping the human genome and in identifying certain “disease genes” common in specific populations. On the other hand, this technology has significantly threatened the privacy of research subjects participating in population genomics studies, who may, unwittingly, contribute to the construction of new groups that put those subjects at risk for discrimination and stigmatization. In the final section of this paper I examine some ways in which the use of data mining in the context of population genomics research poses a critical challenge for the principle of informed consent, which traditionally has played a central role in protecting the privacy interests of research subjects participating in epidemiological studies. (shrink)

Academic research into RFID technology has largely neglected ethics. What scarce research was being performed has now dwindled despite having some consumers continue to express their ethical concerns. This article aims at reducing this apparent void by exploring the antecedents that cause the public to react when consumers are targeted by RFID technology. Through the analysis of 11 real RFID implementations used to target consumers, our research indicates that several factors can influence consumer response through the distinct nature of the (...) technology, namely, Customization of communications, Imposition of tag use, Segmentation and targeting, Modified role of the sales representative, Physical distance between the consumer and the tag, and Security of transactions. The article then proposes a construct to determine the risk of raising consumer ethical concerns. The construct of “Connective Proximity” and its three components are defined. Our research highlights the need for further studies on the ethical considerations of tagging humans and specifically tracking consumers when performing marketing activities with RFID technology. Our article aims at invigorating research on this topic, which has a lot to contribute to both society and corporations. (shrink)

-/- Policy regulations of ethically controversial genetic technologies should, on the one hand, be based on ethical principles. On the other hand, they should be socially acceptable to ensure implementation. In addition, they should align with ethical theory. Yet to date we lack a reliable and valid scale to measure the relevant ethical judgements in laypeople. We target this lacuna. -/- We developed a scale based on ethical principles to elicit lay judgments: the Genetic Technologies Questionnaire (GTQ). In two pilot (...) studies and a pre-registered main study, we validated the scale in a representative sample of the US population. -/- The final version of the scale contains 20 items but remains highly reliable even when reduced to five. It also predicts behaviour; for example, ethical judgments as measured by the GTQ predicted hypothetical donations and grocery shopping. In addition, the GTQ may be of interest to policymakers and ethicists because it reveals coherent and ethically justified judgments in laypeople. For instance, the GTQ indicates that ethical judgments are sensitive to possible benefits and harms (in line with utilitarian ethics), but also to ethical principles such as the value of consent-autonomy. -/- In conclusion, the GTQ can be recommended for research in both experimental psychology and applied ethics, as well as a tool for ethically and empirically informed policymaking. (shrink)