The right to genetic privacy is presently being incorporated in legal systems all over the world. It remains largely unclear however what interests and values this right serves to protect. There are many different arguments made in the literature, yet none takes into account the problem of how particular values can be justified given the plurality of moral and religious doctrines in our societies. In this article theories of public reason are used in order to explore how genetic privacy could (...) be justified in a way that is sensitive to the “fact of pluralism”. The idea of public reason is specified as the idea that governments should appeal only to values and beliefs that are acceptable to all reasonable citizens in the justification of rights. In examining prevalent arguments for genetic privacy – based on the value of autonomy or on the value of intimacy – it is concluded that they do not meet this requirement. In dealing with this deficiency in the literature, an argument is developed that genetic privacy is fundamental to the democratic participation of all citizens. By referring to the preconditions of democratic citizenship, genetic privacy can be justified in a way that respects the plurality of comprehensive doctrines of morality and religion in contemporary societies. (shrink)

The article undertakes to develop a theory of privacy considered as a fundamental moral right. The authors remind that the conception of the right to privacy is silent on the prospect of protecting informational privacy on consequentialist grounds. However, laws that prevent efficient marketing practices, speedy medical attention, equitable distribution of social resources, and criminal activity could all be justified by appeal to informational privacy as a fundamental right. Finally, the authors show that in the specter of terrorism, privacy can (...) be conceived as a fundamental moral right, one that is completely consistent with the willingness to submit for surveillance of private lives. (shrink)

Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (shrink)

In this article I argue that the proper subjects of intangible property claims include medical records, genetic profiles, and gene enhancement techniques. Coupled with a right to privacy these intangible property rights allow individuals a zone of control that will, in most cases, justifiably exclude governmental or societal invasions into private domains. I argue that the threshold for overriding privacy rights and intangible property rights is higher, in relation to genetic enhancement techniques and sensitive personal information, than is commonly suggested. (...) Once the bar is raised, so‐to‐speak, the burden of overriding it is formidable. Thus many policy decisions that have been recently proposed or enacted – citywide audio and video surveillance, law enforcement DNA sweeps, genetic profiling, national bans on genetic testing and enhancement of humans, to name a few – will have to be backed by very strong arguments. (shrink)

Rights, autonomy, privacy, and confidentialityare concepts commonly used in discussionsconcerning genetic information. When theseconcepts are thought of as denoting absolutenorms and values which cannot be overriden byother considerations, conflicts among themnaturally occur.In this paper, these and related notions areexamined in terms of the duties and obligationsmedical professionals and their clients canhave regarding genetic knowledge. It issuggested that while the prevailing idea ofautonomy is unhelpful in the analysis of theseduties, and the ensuing rights, an alternativereading of personal self-determination canprovide a firmer (...) basis for ethical guidelinesand policies in this field. (shrink)

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. (shrink)

This paper considers the revolutionary developments occurring in the field of genetic mapping and the genetic identification of disease propensities. These breakthroughs are discussed relative to the ethical and economic implications for the insurance industry. Individual's privacy rights and rights to employment must be weighed against the insurers desire for better estimates of future loss costs associated with health, life and other insurances. These are in turn related to the fundamental conception of insurance as a financial intermediary versus insurance as (...) a vehicle for social policy. (shrink)

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 ofmedical records: reliance on governmental guidelines, the useof corporate self-regulation, and my own third hybrid view onhow to maintain a presumption in favor of privacy with respectto medical information, safeguarding privacy as vigorously andcomprehensively as possible, without sacrificing the benefitsof new information technology in medicine. None of the threemodels I examine are unproblematic, yet (...) it is crucial to weighthe strengths and weaknesses of these alternative approaches. (shrink)

Use of the concept of `areasonable person and his or her expectations'is widely found in legal reasoning. This legalconstruct is employed in the present article toexamine privacy questions associated withcontemporary information technology, especiallythe internet. In particular, reasonableexpectations of privacy while browsing theworld-wide-web and while sending and receivinge-mail are analyzed.

In this article I critically examine Adam Moore’s claim that the threshold for overriding intangible property rights and privacy rights is higher, in relation to genetic enhancement techniques and sensitive personal information, than is commonly suggested. I argue that Moore fails to see how important advances in genetic research are to social justice. Once this point is emphasised one sees that the issue of how formidable overriding these rights are is open to much debate. There are strong reasons, on grounds (...) of social justice, for thinking the importance of such rights is likely to be diminished in the interests of ensuring a more just distribution of genes essential to pursuing what John Rawls calls a person’s ”rational plan of life’. (shrink)

The UK Government published various circulars to indicate the importance of respecting the privacy and dignity of NHS patients following the implementation of the Human Rights Act, 1998. This research used an ethnographic method to determine the extent to which health professionals had in fact upheld the philosophy of these documents. Fieldwork using nonparticipant observation, and unstructured and semistructured interviews with patients and staff, took place over six months in three acute care wards in a large district NHS trust hospital. (...) Applying the principles of phenomenology and grounded theory, the data were analysed and the contents organized into 11 key categories, leading to the formulation of a privacy model. The level of intrusion into patients’ privacy by health professionals was measured against the benchmarking of the ‘dignity and privacy’ factors contained in the Department of Health’s The essence of care document and Article 8(2) of the Human Rights Act. The findings established that patients had little privacy in the wards, and that the terms ‘privacy of the person’ and ‘dignity’ are interrelated. (shrink)

The cluster of concerns usually identified asmatters of privacy can be adequately accountedfor by unpacking our natural rights to life,liberty, and property. Privacy as derived fromfundamental natural rights to life, liberty,and property encompasses the advantages of thecontrol and restricted access theories withouttheir attendant difficulties.

As a relative concept, privacy is difficult to define in universal terms. In the New Zealand setting recent legislation aims to protect patients’ privacy but anecdotal evidence suggests that these policies are not well understood by some providers and recipients of health care. This qualitative study set out to identify some of the issues by exploring former patients’ perceptions of privacy in shared hospital rooms. The findings suggest a conditional acceptance of a loss of privacy in an environment dictated by (...) architectural structure and by fiscal and time constraints. Participants indicated an awareness that personal information could be overheard and that their preference for a choice of setting for serious discussions was desirable. Some enjoyed the support offered in shared rooms, while, for others, overhearing another person’s health issues caused unnecessary distress. The participants suggested that knowing they could be overheard constrained information disclosure. This withholding of information has implications for health professionals’ ability to diagnose and treat patients appropriately. (shrink)