This paper begins with a discussion of the value of privacy, especially for medical records in an age of advancing technology. I then examine three alternative approaches to protection of medical records: reliance on governmental guidelines, the use of corporate self-regulation, and my own third hybrid view on how to maintain a presumption in favor of privacy with respect to medical information, safeguarding privacy as vigorously and comprehensively as possible, without sacrificing the benefits of new information technology in medicine. None of the three models I examine are unproblematic, yet it is crucial to weigh the strengths and weaknesses of these alternative approaches.
Technology has provided state and federal governments with huge collections of DNA samples and identifying profiles stored in databanks. That information can be used to solve crimes by matching samples from convicted felons to unsolved crimes, and has aided law enforcement in investigating and convicting suspects, and exonerating innocent felons, even after lengthy incarceration. Rights surrounding the provision of DNA samples, however, remain unclear in light of the constitutional guarantee against "unreasonable searches and seizures" and privacy concerns. The courts have just begun to consider this issue, and have provided little guidance. It is unclear whether the laws governing protected health information are applicable to the instant situation, and if so, the degree to which they apply. DNA databanks are not uniformly regulated, and it is possible that DNA samples contained in them may be used for purposes unintended by donors of the samples. As people live their lives, they leave bits of their DNA behind. They cannot be assured that these tiny specimens will not be taken or used against their will or without their knowledge for activities such as profiling to measure tendencies such as thrill-seeking, aggressiveness, or crimes with threatening behavior. Existing racial or ethnic discrimination and profiling may also encompass genetic discrimination and profiling, creating societal class distinctions. This article will explore the constitutionality of collecting genetic materials, the ethics of such activities, and balance the social good in solving crime and deterrence against the individual's security, liberty, and privacy.
Recent advances in genetic engineering now allow the design of programmable biological artifacts. Such programming may include usage constraints that will alter the balance of ownership and control for biotechnology products. Similar changes have been analyzed in the context of digital content management systems, and while this previous work is useful in analyzing issues related to biological programming, the latter technology presents new conceptual problems that require more comprehensive evaluation of the interplay between law and technologically embedded values. In particular, the ability to embed contractual terms in technological artifacts now requires a re-examination of disclosure and consent in transactions involving such artifacts.
In this paper we will examine some ethical aspects of the role that computers and computing increasingly play in new genetics. Our claim is that there is no new genetics without computer science. Computer science is important for the new genetics on two levels: (1) from a theoretical perspective, and (2) from the point of view of geneticists practice. With respect to (1), the new genetics is fully impregnate with concepts that are basic for computer science. Regarding (2), recent developments in the Human Genome Project (HGP) have shown that computers shape the practices of molecular genetics; an important example is the Shotgun Method's contribution to accelerating the mapping of the human genome. A new challenge to the HGP is provided by the Open Source Philosophy (I computer science), which is another way computer technologies now influence the shaping of public policy debates involving genomics.
This essay examines issues involving personal privacy and informed consent that arise at the intersection of information and communication technology (ICT) and population genomics research. I begin by briefly examining the ethical, legal, and social implications (ELSI) program requirements that were established to guide researchers working on the Human Genome Project (HGP). Next I consider a case illustration involving deCODE Genetics, a privately owned genetic 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 (which, in turn, has accelerated the process of finding cures for diseases tha affect those 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 (based on arbitrary and non-obvious patterns and statistical correlations) 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.
As Internet resources are used more frequently for research on social and psychological behavior, concerns grow about whether characteristics of such research affect human subjects protections. Early efforts to address such concerns have done more to identify potential problems than to evaluate them or to seek solutions, leaving bodies charged with human subjects oversight in a quagmire. This article critiques some of these issues in light of the US Code of Federal Regulations' policies for the Protection of Human Subjects, and argues that some of the issues have no pertinence when examined in the context of common methodological approaches that previous commentators failed to consider. By separating applicable contexts from those that are not, and by identifying cases where subjects' characteristics are irrelevant and/or impossible to provide, oversight committees may be able to consider research applications more appropriately, and investigators may be less ethically bound to ascertain and demonstrate those characteristics.
In the analysis of the ethical problems of online research, there is much to be learned from the work that has already been done on research ethics in the social sciences and the humanities. I discuss the structure of norms in the Norwegian ethical guidelines for research in the social sciences with respect to their relevance for the ethical issues of Internet research. A four-step procedure for the ethical evaluation of research is suggested. I argue that even though, at one level, the problems of online research are very similar to those we find in traditional areas of scientific research, there still are some issues that are unique to research online. A general model for the analysis of privacy and data protection is suggested. This model is then used to characterize the special problems pertaining to the protection of privacy in online contexts, and to argue that one cannot assume a simple distinction between the private and the public when researching in such contexts.
I begin with a discussion of the value of privacy and what we lose without it. I then turn to the difficulties of preserving privacy for genetic information and other medical records in the face of advanced information technology. I suggest three alternative public policy approaches to the problem of protecting individual privacy and also preserving databases for genetic research: (1) governmental guidelines and centralized databases, (2) corporate self-regulation, and (3) my hybrid approach. None of these are unproblematic; I discuss strengths and drawbacks of each, emphasizing the importance of protecting the privacy of sensitive medical and genetic information as well as letting information technology flourish to aid patient care, public health and scientific research.
The primary theme of this paper is the normative case against ownership of one's genetic information along with the source of that information (usually human tissues samples). The argument presented here against such "upstream" property rights is based primarily on utilitarian grounds. This issue has new salience thanks to the Human Genome Project and "bio-prospecting" initiatives based on the aggregation of genetic information, such as the one being managed by deCODE Genetics in Iceland. The rationale for ownership is twofold: ownership will protect the basic human rights of privacy and autonomy and it will enable the data subjects to share in the tangible benefits of the genetic research. Proponents of this viewpoint often cite the principle of genetic exceptionalism, which asserts that genetic information needs a higher level of protection than other kinds of personal information such as financial data. We argue, however, that the recognition of such ownership rights would lead to inefficiency along with the disutility of genetic discoveries. Biomedical research will be hampered if property rights in genes and genetic material are too extensive. We contend that other mechanisms such as informed consent and strict confidentiality rules can accomplish the same result as a property right without the liabilities of an exclusive entitlement.
Computing plays an important role in genetics (and vice versa). Theoretically, computing provides a conceptual model for the function and malfunction of our genetic machinery. Practically, contemporary computers and robots equipped with advanced algorithms make the revelation of the complete human genome imminent--computers are about to reveal our genetic souls for the first time. Ethically, computers help protect privacy by restricting access in sophisticated ways to genetic information. But the inexorable fact that computers will increasingly collect, analyze, and disseminate abundant amounts of genetic information made available through the genetic revolution, not to mention that inexpensive computing devices will make genetic information gathering easier, underscores the need for strong and immediate privacy legislation.
After describing the Child Pornography Prevention Act (CPPA) of 1996, I argue that the Act ought to be significantly amended. The central objections to CPPA are (1) that it is so broad in its main proscriptions as to violate the First Amendment rights of adults; (2) that it altogether fails to provide minors and their legal guardians with the privacy rights needed to combat the harms associated with certain classes of prurient material on the Internet; and, (3) that the actual rate of technological advance in home computing, and Congress' failure to appreciate how prurient material may be accessed, combined with CPPA to wrongfully expose an increasing number of individuals to possible prosecution and personal ruination. Several other objections are registered along the way, including one aimed at the draconian punishments the law metes out to violators. I close by offering the outlines of an amended version of the law that promises not to violate the rights of adults, that affords children and adults equal and effective protection against the very harmful practices the current law cannot eradicate, and that prescribes punishments that are consistent with the tolerance necessary to support a more democratic vision of the Internet.
Some kinds of technological change not only trigger
new ethical problems, but also give rise to questions about those
very approaches to addressing ethical problems that have been
relied upon in the past. Writing in the aftermath of World War ...
The importance of online social spaces is growing. New Web 2.0 resources allow the creation of social networks by any netizen
with minimal technical skills. These communities can be extremely narrowly focussed. In this paper, I identify two potential
costs of membership in narrowly focussed virtual communities. First, that narrowly focussed communities can polarise attitudes
and prejudices leading to increased social cleavage and division. Second, that they can lead sick individuals to revel in
their illness, deliberately indulging in their disease and denying the edicts of the medical profession. I specifically examine
illness communities centred on the now defunct Multiple Personality Disorder. I highlight these potential problems and point
to some technologies that may help combat them.
I begin with a discussion of the value of privacy and what we lose without it. I then turn to the difficulties of preserving privacy for genetic information and other medical records in the face of advanced information technology. I suggest three alternative ...
Designing security measures often involves trade-offs between various types of objectives. Multiple stakeholders may have conflicting demands and may have different ideas on how to resolve the resulting design conflicts. This paper reports on an application ...
Although the word empathy only recently came into existence, eighteenth century philosopher, David Hume, significantly contributed to our current understanding of the term. Hume was among the first to suggest that an ...
I argue that the problem of `moral luck' is an unjustly neglected topic within Computer Ethics. This is unfortunate given that the very nature of computer technology, its `logical malleability', leads to ever greater levels of complexity, unreliability ...
This paper discusses basic concepts and recentdevelopments in intellectual property ownership in theUnited States. Various philosophical arguments havepreviously been put forward to support the creation andmaintenance of intellectual property systems. However, in an age of information, access toinformation is a critical need and should beguaranteed for every citizen. Any right of controlover the information, adopted as an incentive toencourage creation and distribution of intellectualproperty, should be subservient to an overriding needto ensure access to the information. The principlesunderlying intellectual property regimes in the UnitedStates recognize and embody this. In addition, thephilosophical/ethical dimensions of this debate couldalso be structured to support this attitude as well. Intellectual property is fast becoming digitalproperty. New technologies allow owners to extendtheir control of both legitimate uses and misuses ofthe intellectual property. Recent trends demonstratethat the access principle has not always beenparamount in judicial or legislative applications. Thetrend rather is to allow a proprietarianism factor todominate the analysis. Finally, several principles areforwarded which would assist adjudicators and policymakers in reaffirming the basic purpose of theintellectual property law, which is to benefit thepublic at large.
This article explores recent developments inthe regulation of Internet speech, inparticular, injurious or defamatory speech andthe impact the attempts at regulation arehaving on the `body' in the sense of theindividual person who speaks through the mediumof the Internet and upon those harmed by thatspeech. The article proceeds in threesections. First, a brief history of the legalattempts to regulate defamatory Internet speechin the United States is presented; a shortcomparative discussion of defamation law in theUK and Australia is included. As discussedbelow, this regulation has altered thetraditional legal paradigm of responsibilityand, as a result, creates potential problems forthe future of unrestricted and even anonymousspeech on the Internet. Second, an ethicalassessment is made of the defamatory speechenvironment in order to determine which actorshave moral responsibility for the harm causedby defamatory speech. This moral assessment iscompared to the developing and anticipatedlegal paradigm to identify possible conformityof moral and legal tenants or to recognize theconflict between morality and law in assigningresponsibility to defamatory actors. Thisassessment then concludes with possiblesuggestions for changes in the legal climategoverning the regulation of defamatory speechon the Internet, as well as prediction of theresult should the legal climate continue todevelop on its present course. This is not tosuggest that all law, or even the law ofdefamation, be structured to reflect thesubjectivity of a moral construct, but since itis the authors position that the legalassignment of liability in online settings ismisaligned, this reflection can serve asbeginning reassessment of that assignment.
The paper has three parts. First, a survey and analysis is given ofthe structure of individual rights in the recent EU Directive ondata protection. It is argued that at the core of this structure isan unexplicated notion of what the data subject can `reasonablyexpect' concerning the further processing of information about himor herself. In the second part of the paper it is argued thattheories of privacy popular among philosophers are not able to shed much light on the issues treated in the Directive, whichare, arguably, among the central problems pertaining to theprotection of individual rights in the information society. Inthe third part of the paper, some suggestions are made for a richerphilosophical theory of data protection and privacy. It is arguedthat this account is better suited to the task of characterizingthe central issues raised by the Directive.
Standard agent and action-based approaches in computer ethics tend to have difficulty dealing with complex systems-level issues
such as the digital divide and globalisation. This paper argues for a value-based agenda to complement traditional approaches
in computer ethics, and that one value-based approach well-suited to technological domains can be found in capability theory.
Capability approaches have recently become influential in a number of fields with an ethical or policy dimension, but have
not so far been applied in computer ethics. The paper introduces two major versions of the theory – those advanced by Amartya
Sen and Martha Nussbaum – and argues that they offer potentially valuable conceptual tools for computer ethics. By developing
a theory of value based on core human functionings and the capabilities (powers, freedoms) required to realise them, capability
theory is shown to have a number of potential benefits that complement standard ethical theory, opening up new approaches
to analysis and providing a framework that incorporates a justice as well as an ethics dimension. The underlying functionalism
of capability theory is seen to be particularly appropriate to technology ethics, enabling the integration of normative and
descriptive analysis of technology in terms of human needs and values. The paper concludes by considering some criticisms
of the theory and directions for further development.
To what extent should humans transfer, or abdicate, responsibility to computers? In this paper, I distinguish six different senses of responsible and then consider in which of these senses computers can, and in which they cannot, be said to be responsible for deciding various outcomes. I sort out and explore two different kinds of complaint against putting computers in greater control of our lives: (i) as finite and fallible human beings, there is a limit to how far we can acheive increased reliability through complex devices of our own design; (ii) even when computers are more reliable than humans, certain tasks (e.g., selecting an appropriate gift for a friend, solving the daily crossword puzzle) are inappropriately performed by anyone (or anything) other than oneself. In critically evaluating these claims, I arrive at three main conclusions: (1) While we ought to correct for many of our shortcomings by availing ourselves of the computer''s larger memory, faster processing speed and greater stamina, we are limited by our own finiteness and fallibility (rather than by whatever limitations may be inherent in silicon and metal) in the ability to transcend our own unreliability. Moreover, if we rely on programmed computers to such an extent that we lose touch with the human experience and insight that formed the basis for their programming design, our fallibility is magnified rather than mitigated. (2) Autonomous moral agents can reasonably defer to greater expertise, whether human or cybernetic. But they cannot reasonably relinquish background-oversight responsibility. They must be prepared, at least periodically, to review whether the expertise to which they defer is indeed functioning as he/she/it was authorized to do, and to take steps to revoke that authority, if necessary. (3) Though outcomes matter, it can also matter how they are brought about, and by whom. Thus, reflecting on how much of our lives should be directed and implemented by computer may be another way of testing any thoroughly end-state or consequentialist conception of the good and decent life. To live with meaning and purpose, we need to actively engage our own faculties and empathetically connect up with, and resonate to, others. Thus there is some limit to how much of life can be appropriately lived by anyone (or anything) other than ourselves.
The web creates manyopportunities for encroachment on intellectualproperty including trademarks. Our principaltask in this paper is an investigation into anunusual form of such encroachment: theimproper use of metatags. A metatag is a pieceof HTML code that provides summary informationabout a web page. If used in an appropriatemanner, these metatags can play a legitimaterole in helping consumers locate information. But the ``keyword'' metatag is particularlysusceptible to manipulation. These tags can beeasily abused by web site creators anxious tobait search engines and bring scores ofvisitors to their sites. The law aboutmetatags is far from settled and many legalscholars are uncomfortable with the conclusionthat the unauthorized use of a trademark in ametatag represents infringement. How should weassess this practice known as ``spamdexing'' froma normative perspective? Is it commercial fairplay or something more sinister? We make thecase here that there are salient moral problemswith spamdexing since it exploits thereputational goodwill of trademark owners andconfuses consumers. It violates basic moralduties and it flouts the golden rule principle. Hence unauthorized use of a competitor'strademark in a metatag is not morallyacceptable.
This paper explores the nature of, and justification for, copyright in academic texts in the light of recent developments in information technology, in particular the growth of electronic publication on the internet. Copyright, like other forms of property, is best thought of as a cluster of rights. A distinction is drawn within this cluster between first order `control rights' and higher order `commodity rights'. It is argued that copyright in academic texts is founded on its role as a means to allow academics to fulfil their role responsibilities. While the possession and exercise by academics of commodity rights can be thus justified in the case of mechanical print-based publication, since this helps make possible the reproduction and dissemination of academic texts, they cannot be so justified in the case of electronic publication. There are nevertheless good reasons to retain various control rights.
