The idea of homesteading can be extended to the realm of biological entities, to the ownership of information wherein organisms perform artifactual functions as a result of human development. Can the information of biological entities be ethically “homesteaded”: should humans (or businesses) have ownership rights over this information from the basis of mere development and possession, as in Locke’s theory of private property? I offer three non-consequentialist arguments against such homesteading: the information makeup of biological entities is not commonly owned, (...) and thus is not available for homesteading; the value of the individual biological entity extends to the information whereby it is constituted, and includes inalienable rights of an entity over itself and its information; and use of life as an information artifact makes an organism an unending means to an end rather than an end itself. I conclude that the information space of biological entities is not open for homesteading, not liable to private ownership, and should not be available for perpetual exploitation. (shrink)

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)

In recent years, there has been renewed controversy about monuments to the Confederacy: these monuments, their detractors insist, are instruments of white supremacy—and, as such, ought to be lowered immediately. The dialectic is by now familiar: though some insist that these monuments are mere sites of memory, others note the relevant memory is that of the Confederacy—and that, because of this, the monuments are inevitably racist. Worse, the monuments were raised by racist individuals for racist ends; no surprise, then, that (...) so many experience them as racist—that is, as instruments of white supremacy. For all of these reasons, the monuments ought to be lowered. -/- And probably it is so. But what does one do when the instrument of white supremacy is a mountain? What does one do, moreover, when it is less than clear whether that mountain is an instrument of white supremacy? What does one do, in other words, when that mountain is a monument to a regime only ambiguously racist? What does one do when it was raised by a racist individual for a racist end—but has since that time come to be seen as a monument to precisely the opposite ideals? What does one do, in other words, when it is experienced by most not as a symbol of white supremacy but as a symbol—indeed, as the symbol—of freedom and equality? -/- What does one do, in short, with Mount Rushmore at this moment—that is, in the wake of the Charleston shooting and the Charlottesville rally? And can the experience of those who saw the mountain prior to its status as a monument—that is, the Lakota—illuminate this question? In this essay, I examine these monumental questions. I ask them—and try to answer them—first as a consequentialist, second as a deontologist, and third as a virtue ethicist. (shrink)

Recent ethical and legal challenges have arisen concerning the rights of individuals over their IVF embryos, leading to questions about how, when the wishes of parents regarding their embryos conflict, such situations ought to be resolved. A notion commonly invoked in relation to frozen embryo disputes is that of reproductive rights: a right to have (or not to have) children. This has sometimes been interpreted to mean a right to have, or not to have, one's own genetic children. But can (...) such rights legitimately be asserted to give rise to claims over embryos? We examine the question of property in genetic material as applied to gametes and embryos, and whether rights over genetic information extend to grant control over IVF embryos. In particular we consider the purported right not to have one's own genetically related children from a property-based perspective. We argue that even if we concede that such (property) rights do exist, those rights become limited in scope and application upon engaging in reproduction. We want to show that once an IVF embryo is created for the purpose of reproduction, any right not to have genetically-related children that may be based in property rights over genetic information is ceded. There is thus no right to prevent one's IVF embryos from being brought to birth on the basis of a right to avoid having one's own genetic children. Although there may be reproductive rights over gametes and embryos, these are not grounded in genetic information. (shrink)

Developing and applying a framework for understanding the complexities of economic and legal considerations in two recent Supreme Court rulings was the focus of this research. Of especial concern was the protection of intellectual property in the pharmaceutical industry. Two cases from 2013 were selected: FTC v. Activis and Association for Molecular Pathology v. Myriad Genetics, Inc.. Part of the rationale for the selection was the importance of the Supreme Court rulings and the importance of the pharmaceutical sector. A qualitative (...) content analysis of the Court’s reported decision in each case was analyzed. Since ethical considerations may or may not be consistent with efficiency considerations of plaintiffs, defendants, or the courts, both efficiency and ethical arguments were included. Equally important to the understanding of the economic and ethical issues in the two above- mentioned cases was the development of a rationale for including and excluding a variety of ethical theories, ultimately influenced by Markkula Center For Applied Ethics Of Santa Clara University and Schumann :93–111, 2001). The refinement and use of a levels analysis approach portrays societal, organizational, and individual impacts, and allows for deeper understanding of litigated cases, irrespective of the country in which the litigation takes place :385–393, 2004; Foss et al., J Manag Stud 47:455–482, 2010). A rationale for this framework is the societal and organizational impacts on the myriad of stakeholders in the pharmaceutical sector. We suggest that this framework can be applied to other industries and other complex conflicts among stakeholders as well. (shrink)