Wittgenstein's arguments about rule-following and private language turn both on interpretation and what he called our 'pictures' of the mind. His remarks about these can be understood in terms of the conceptual metaphor of the mind as a container, and enable us to give a better account of physicalism.

I first distinguish issues about rules and issues about language in Wittgenstein. I then I distinguish private and private rules and argue that there can be private rules because norms of reasoning are private rules. I suggest that Wittgenstein may have equated rules with public rules. I end with reflections on private language.

On January 25, 2013, theFederal Registerpublished the Department of Health and Human Services omnibus amendments to the Health Insurance Portability and Accountability Act Privacy, Security, Enforcement, and Breach Notification Rules. These modifications also include the final versions of the HIPAA regulation amendments mandated by the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act. Although the amended rules were effective on March 26, 2013, covered entities and their business associates have a (...) compliance date of September 23, 2013.It has been 10 years since the April 14, 2003 compliance date for the original HIPAA Privacy Rule. Despite HHS’ clarification of some issues by posting answers to frequently asked questions, there have been no significant amendments to the Privacy Rule since 2003. (shrink)

The HIPAA Privacy Rule is notoriously weak because of its incomplete coverage, numerous exclusions and exemptions, and limited rights for individuals. The three areas in which it provides the most protection are fundraising, marketing, and research. Provisions of the 21st Century Cures Act, pending in Congress, and the Notice of Proposed Rulemaking to amend the federal research regulations, awaiting final regulatory action, would weaken the privacy protections for research. If these measures are adopted, the HIPAA Privacy Rule (...) would have so little value that it might not be worth the aggravation and burden. (shrink)

Much significant work on the topic of privacy and identity on social network sites stems from the realms of media, information and cultural studies, and sociology eschewing language-based disciplines almost entirely. To redress the balance, this article draws on discourse-centred online ethnography, an approach which blends online ethnography with discourse analysis, to explore how self-presentation on Facebook is regulated by means of privacy. To this end, I analyse a dataset of statuses, comments, links, photographs and interviews from five (...) Greek users. The findings highlight users’ creativity and criticality in combining software affordances with linguistic signals and textual practices to manage their privacy and hence their identity. (shrink)

: HIPAA is often described as a privacy rule. It is not. In fact, HIPAA is a disclosure regulation, and it has effectively dismantled the longstanding moral and legal tradition of patient confidentiality. By permitting broad and easy dissemination of patients’ medical information, with no audit trails for most disclosures, it has undermined both medical ethics and the effectiveness of medical care.

This article examines implications of computer-sifted information: What happens when that information is reshuffled and used for other purposes than originally intended? Historical concepts of the philosophy of privacy are examined, essentially to demonstrate that a lack of clear precedent further confuses a fast-changing situation. The author argues that, a 100-odd years ago, advancing media technology prompted Louis Brandeis to proclaim a right to be let alone - but in the intervening years we have not been particularly effective in (...) developing proactive ethics and policy to deal with privacy issues. One case, a bill to restrict access to motor vehicle information, is cited as an example of proactive legislation; without advocating specific legislation, the author calls for increased foresight in the issue of technology and privacy. (shrink)

Current economic conditions have coincided with the implementation of the Health Insurance Portability and Accountability Act and forced public health officials to consider how to ethically incorporate compliance into their already strained budgets, while maintaining the integrity and intent of the legislation.As of April 14, 2003, the HIPAA Privacy Rule provides a new federal floor of protections for personal health information. The Privacy Rule establishes standards for the protection of health information held by many physicians’ offices, health plans, (...) and health care clearinghouses. The Rule protects personal health information by establishing conditions regulating the use and disclosure of individually identifiable health information by these entities, also referred to as covered entities. The Rule does not prevent the daily operations of health care establishments. (shrink)

Selected by the Economist as one of the best books of 2020. -/- Privacy Is Power argues that people should protect their personal data because privacy is a kind of power. If we give too much of our data to corporations, the wealthy will rule. If we give too much personal data to governments, we risk sliding into authoritarianism. For democracy to be strong, the bulk of power needs to be with the citizenry, and whoever has the data (...) will have the power. Privacy, I argue, is not a personal preference; it is a political concern. I also argue that personal data is a toxic asset, and should be regulated as if it were a toxic substance, similar to asbestos. I call for a complete ban to the trade in personal data. The book is at once philosophical and political, and extremely practical and accessible. It discusses liberal democracy, equality, justice, and autonomy. It includes a chapter for policymakers, and one that addresses what ordinary citizens can do to protect privacy. Finally, the book covers the tension between privacy and public health in the context of covid19. -/- . (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 12.3 (2002) 299-303 [Access article in PDF] Bioethics Inside the Beltway What Should IRBs Consider When Applying the Privacy Rule to Research? Julie Waltz Gerlach In 1996, Congress mandated the establishment of standards for the privacy of individually identifiable health information through the Health Insurance and Portability and Accountability Act of 1996 (HIPAA). Until the establishment of HIPAA, personal health information could (...) be distributed without notice or consent for reasons that had nothing to do with a patient's medical treatment or health care reimbursement. Patient information held by a health plan could be passed on to a lender who then might deny the patient's application for a home mortgage or a credit card or to an employer who might use it for personnel decisions. Congress failed to meet its 21 August 1996 deadline established by HIPAA to pass privacy legislation; the Act passed the responsibility to Department of Health and Human Services (DHHS). On 28 December 2000, the Secretary of Health and Human Services released final privacy regulations relating to the protection of patients' individually identifiable health information. The "Standards for Privacy of Individually Identifiable Health Information" (Privacy Rule/current) took effect 14 April 2001. As required by HIPAA, the Privacy Rule established conditions for the collection, use, and disclosure of protected health information by covered entities for research purposes. Covered entities, defined as health plans, health care clearinghouses, and health care providers that engage electronically in a wide range of financial and administrative transactions related to payment and reimbursement, must comply by 14 April 2003 (DHHS 2000, p. 82462). To ensure that the provisions of the final rule provide strong privacy protection without hindering access to health care, the Department of Health and Human Services (DHHS 2002, p. 14776) has proposed modifications to the Privacy Rule.The final Privacy Rule (DHHS 2001) grants substantial rights to individuals/research participants to be informed of how their protected health information is maintained and how that information may be used or disclosed. It also defines individual's/research participants' rights with regard to gaining access to information about themselves, when such information is held by covered entities. [End Page 299]The Privacy Rule requires researchers either to receive authorization from individuals/research participants to collect, use, and disclose protected health information, or to obtain a waiver of authorization that is approved by an institutional review board (IRB) or Privacy Board, or to use de-identified data. Section 164.508 of the Privacy Rule, entitled "Use and Disclosures for Which an Authorization Is Required," describes how IRBs will be directly affected. The rule focuses not just on research but on the overall privacy of all identifiable health information. Institutions have the option of adding these required duties to IRBs or establishing "privacy boards." Privacy boards, as defined by the Privacy Rule, are to be composed of members with varying backgrounds and professional competency to review the effect of the research protocol on the individual/research participant's privacy rights. The board must include at least one member who is not affiliated with the covered entity, or any entity conducting or sponsoring the research, and not related to any person who is affiliated with such entities. Board members cannot participate in the review of any research project in which the member has a conflict of interest.The basic concepts and tenets of privacy and confidentiality are well known to IRBs in the United States, which operate under the Common Rule (45 CFR 46) and/or the Food and Drug Administration's (FDA) human subject protection regulations. Both sets of regulations require IRBs to ensure that risks (including privacy risks) are minimized. Under these regulations, IRBs must consider the confidentiality of research data and whether researchers should have access to confidential medical information. IRBs also must review the consent form as a process of communication that will inform research subjects about the research study.One noteworthy aspect of the Privacy Rule is its application to all research regardless of funding source. Currently, research funded by... (shrink)

While the balance between individual privacy and government monitoring or corporate surveillance has been a frequent topic across numerous disciplines, the issue of privacy within the family has been largely ignored in recent privacy debates. Yet privacy intrusions between parents and children or between adult partners or spouses can be just as profound as those found in the more “public spheres” of life. Popular access to increasingly sophisticated forms of electronic surveillance technologies has altered the dynamics (...) of family relationships. Monitoring, mediated and facilitated by practices of both covert and overt electronic surveillance, has changed the nature of privacy within the family. Parents are tracking children via GPS-enabled cell phone tracking software and are monitoring the Internet use of family members. Parents, siblings, and children are also posting information about their family members online, often without consent, and are creating social media profiles for others online. Prior scholarly work in philosophy and law has primarily addressed the privacy of children from third parties, usually commercial entities, and in the context of making medical decisions. Less attention has been directed at exploring a more general right of privacy of one family member against parents, siblings, children, or spouses. In this article, we do just that. We consider several moral rules that determine appropriate privacy boundaries within the family. More specifically, we will consider when overt or covert surveillance of a child, spouse, or partner by an adult family member is morally permitted. (shrink)

This Article takes the perspective of law and philosophy, integrating insights from computer science. First, I will argue that in the era of big data analytics we need an understanding of privacy that is capable of protecting what is uncountable, incalculable or incomputable about individual persons. To instigate this new dimension of the right to privacy, I expand previous work on the relational nature of privacy, and the productive indeterminacy of human identity it implies, into an ecological (...) understanding of privacy, taking into account the technological environment that mediates the constitution of human identity. Second, I will investigate how machine learning actually works, detecting a series of design choices that inform the accuracy of the outcome, each entailing trade-offs that determine the relevance, validity and reliability of the algorithm’s accuracy for real life problems. I argue that incomputability does not call for a rejection of machine learning per se but calls for a research design that enables those who will be affected by the algorithms to become involved and to learn how machines learn — resulting in a better understanding of their potential and limitations. A better understanding of the limitations that are inherent in machine learning will deflate some of the eschatological expectations, and provide for better decision-making about whether and if so how to implement machine learning in specific domains or contexts. I will highlight how a reliable research design aligns with purpose limitation as core to its methodological integrity. This Article, then, advocates a practice of “agonistic machine learning” that will contribute to responsible decisions about the integration of data-driven applications into our environments while simultaneously bringing them under the Rule of Law. This should also provide the best means to achieve effective protection against overdetermination of individuals by machine inferences. (shrink)

Privacy is protected in biobank-based research in the US primarily by the Health Insurance Portability and Accountability Act Privacy Rule and the Federal Policy for Protection of Human Subjects. Neither rule, however, was created to function in the unique context of biobank research, and therefore neither applies to all biobank-based research. Not only is it challenging to determine when the HIPAA Privacy Rule or the Common Rule apply, but these laws apply different standards to protect privacy. (...) In addition, many other federal and state laws may be applicable to a particular biobank, researcher, or project. US law also does not directly address international sharing of data or specimens outside of the EU–US Safe Harbor Agreement, which only applies to receipt of data by certain US entities from EU countries, and is in the process of revision. Although new rules would help clarify privacy protections in biobanking, any implemented changes should be studied to determine the sufficiency of the protections as well as its ability to facilitate or hinder international collaborations. (shrink)

The demand for more transparency is hardly ever questioned. When it is, it is generally questioned in the name of a protection of privacy. In a traditional liberal understanding, there is a non-alienable “right to privacy” (Warren/Brandeis, 1890). Many political struggles, however, involved ignoring such boundaries, and making public things that were meant to remain private (domestic violence, gender oppression, child abuse etc.). While holding that the distinction between private and public is necessary, it must remain mobile and (...) subject to renegotiation. Civil inattention highlights the importance of disregarding: disregarding what others we share the same public space with do, as long as it is not of public relevance; and disregarding such rules of privacy if a violation of basic human rights is taking place, in order to make such behaviour public. In some cases, disregard and ignorance can thus be a moral virtue. (shrink)

For nearly twenty-five years, federal regulation of privacy issues in research involving human subjects was the primary province of the federal rule for Protection of Human Subjects. As of April 14, 2003, the compliance date for the Privacy Rule of the Health Insurance Portability and Accountability Act, however, the Common Rule and the Privacy Rule jointly regulate research privacy. Although, in theory, the Privacy Rule is intended to complement the Common Rule, there are several areas (...) in which the rules diverge. In some instances the inconsistencies result in gaps in privacy protection; in other instances the inconsistencies result in added burdens on researchers without additional privacy protections. In all instances, the lack of harmonization of these rules has created confusion, frustration, and misunderstanding by researchers, research subjects, and institutional review boards. In this article, I review the major provisions of the Privacy Rule for research, explain the areas in which the Privacy Rule and Common Rule differ, and conclude that the two rules should be revised to promote consistency and maximize privacy protections while minimizing the burdens on research. (shrink)

Artificial intelligence (AI) is increasingly being developed and implemented in healthcare. This presents privacy issues since many AIs are privately owned and rely on data sharing arrangements for mass quantities of patient health information. We investigated the Canadian legal and policy framework focusing on regulation relevant to the potential for inappropriate use or disclosure of personal health information by private AI companies. This included analysis of federal and provincial legislation, common law and research ethics policy. Our evaluation of the (...) various regulatory frameworks found that together they require private AI companies and their partners in healthcare implementation to meet high standards of privacy protection that prioritize patient autonomy, with limited exceptions. We found that healthcare AI systems are required to be consistent with the rules and foundational ethical norms enshrined in law and research ethics, even if this poses challenges to implementation. Data sharing arrangements must focus on tight integration with high levels of data security, strong oversight and retention of patient control over data. (shrink)

This paper explores the degree of privacy athletes can expect and demand in the era of genetic technology in sport. Detecting genetic enhancements in sport, and consequently doping violations, using genetic tests is problematic because testing requires access to athletes' genetic information, and accessing genetic information creates many potential privacy issues and concerns throughout the world. Whether it is morally acceptable to subject athletes to the tests used to detect genetic modifications in sport is taken up in this (...) paper, and I argue that the elite sport movement faces an ethical dilemma since rules prohibit athletes from utilising certain substances, methods and procedures, but the testing methods needed to ensure compliance with the rules are controversial and at odds with a reasonable expectation of privacy. (shrink)

This article addresses the question of whether an expectation of privacy is reasonable in the face of new technologies of surveillance, by developing a principle that best fits our intuitions. A "no sense enhancement" principle which would rule out searches using technologically sophisticated devices is rejected. The paper instead argues for the "mischance principle," which proscribes uses of technology that reveal what could not plausibly be discovered accidentally without the technology, subject to the proviso that searches that serve a (...) great public good that clearly outweighs minimal intrusions upon privacy are permissible. Justifications of the principle are discussed, including reasons why we should use the principle and not rely solely on a utilitarian balancing test. The principle is applied to uses of aerial photography and heat-detection devices. (shrink)

The passing of the Patient Protection and Affordable Care Act is a triumph for the field of public health. Its inclusion of many provisions intended to prevent illness and promote health endorses the core belief of public health as expressed by Dr. Georges Benjamin, the long-time executive director of the American Public Health Association, in a Washington Post opinion piece praising ACA for “provid[ing] care as far upstream as possible… [in order to] reduce costs by identifying problems early and then (...) managing them to reduce or eliminate the need for more costly care in the future.” In this article, I consider the conflict between ACA’s adoption of public health goals seeing population health and societal interests in protecting individuals from discrimination based on their health. The article focuses on one aspect of ACA which seeks to lower the costs to employers who provide health insurance for their employees by making it easier for them to offer their employees substantial incentives for participating in and meeting the goals of employer-sponsored Wellness Programs. (shrink)

The use of medical records in research can yield information that is difficult to obtain by other means. When such records are released to investigators in identifiable form, however, substantial privacy and confidentiality risks may be created. These risks become more common and more serious as medical records move to an electronic format. In 1996, the state of Minnesota enacted legislation with respect to consent requirements for the use of medical records in research. This legislation has been widely criticized (...) because—it is claimed—it creates an unnecessary impediment to research. In this article, we show that these arguments rest upon misinterpretation and/or misrepresentation of the 1996 legislation. A consent requirement had actually been present in Minnesota since 1976 (though codified in a patient rights statute rather than a privacy statute). The 1996 law does not require specific consent, as often claimed, but rather only a general authorization. The campaign against the Minnesota legislation appears to have been motivated by concern with respect to the then impending federal privacy rule. The HIPAA rule, as enacted, is in fact less stringent with respect to consent than the Minnesota consent law. On the other hand, the Minnesota consent law has not been effectively applied or enforced. As we change the way we manage sensitive medical information, new efforts are needed to provide protection against the confidentiality risks in research. Patient consent is an important tool in this regard. New instrumentalities are needed to solicit and document consent. (shrink)

Knowledge of others, then, has value; so does immunity from being known. The ability to extend one's knowledge has value; so does the ability to limit other's knowledge of oneself. I have claimed that no interest can count as a right unless it clearly outweighs opposing interests whose presence is logically entailed. I see no way to establish that my interest in not being known, simply as such, outweighs your desire to know about me. I acknowledge the intuitive attractiveness of (...) such a position; but my earlier discussion concluded that the value of privacy is ease, and the value of knowledge is understanding - and it's not obvious that either outweighs the other. Nor is it obvious that the freedom and autonomy which result from the power to limit what others know is more significant than the freedom and autonomy which result from the power to extend one's knowledge. I believe the intuitive attractiveness of the belief that privacy values outweigh knowledge values lies in the entirely correct belief that a society without any privacy would be unpleasant. But a society without mutual knowledge would be impossible.I conclude therefore that there is no right to privacy nor to control over it. Nevertheless, each of these things is a good, and a good made possible (given the presence of other people) by social structures. A desirable society will provide both privacy and control over privacy to some extent. Nothing in my analysis helps determine what the proper extent is, nor what areas of life particularly deserve protection. Those who would argue that privacy and control over it are entailed by respect for persons should, I think, choose instead some particular areas central to being a person, to counting as a person, and then show how one is less likely to exercise one's capacities there fully without privacy or without control over it. Although Gerstein's attempt fails because he inaccurately defines intimacy as a kind of absorption and incorrectly opposes absorption with publicity, I think it is the kind of attempt which must be made. Furthermore, he has probably chosen the right area of life - if anything has a special claim to privacy it is probably the union between people who care for one another. The value of being together alone may be more significant than the value of being alone, if only because words and actions are public while thoughts are not. But I will not try to develop that argument here.In any case both privacy and control over it are social goods; on egalitarian grounds they should, ceteris paribus, be equally available to everyone. This helps explain the “dehumanizing” effect of institutions which provide no privacy at all- prisons and some mental institutions. It is not so much that the inmates are totally known; it is rather that those who know them are not so fully known by them; further, that the staff has a great deal of control over what they disclose of themselves, and the inmates very little. The asymmetry of knowledge in those institutions is one aspect of the asymmetry of power; the completely powerless are likely to feel dehumanized.My analysis also helps account for the wrongness of covert observation. It is not simply that the observer violates the wishes of the observed, for the question is whose wishes trump. The observer is violating the justified expectations of the observed: expectations supported by weighty social conventions. These have more moral weight than simple desires do. The peeping torn is violating a convention which structures the distribution of knowledge, a convention from which he benefits. Without it his own activities might well be impossible. He might be more easily caught; or his victim, less trusting, might choose houses without windows. More deeply, the thrill of what he is doing depends on the existence of the convention. Even morally permissible excitement - the suggestiveness of some clothing- would disappear without conventions about nudity. Presumably, too, there are elements of his own personal life for which he values his privacy. He is on grounds of justice obligated to observe the rule which makes his benefits possible.(Some claims to privacy result from personal predilections, rather than from convention. Parent describes a person who is extremely sensitive about being short, for instance, and does not want his exact height to be common knowledge. Parent, p. 346. The grounds for these claims are obviously different from those I've been discussing. The grounds are the moral obligation not to cause needless pain, or, if the information was given in confidence, to keep one's promises.) Although there is no right to privacy or to control over it as such, there is a right to equality of consideration and to a just distribution of benefits and burdens. To put it another way: there is no natural human right to privacy or to control over it; but a good society will provide some of each, and justice requires that the rules of a good society be observed. This paper was written during Joel Feinberg's 1984 NEH Summer Seminar. I am indebted to NEH for funding, and to Professor Feinberg and the other members of the seminar for helpful comments. (shrink)

Media ethics codes concerning privacy must be updated considering the ease with which information now can be gathered from social networks and disseminated widely. Existing codes allow for deception and privacy invasion in cases of overriding public need when no alternate means are available but do not adequately define what constitutes need or alternate means, or weigh in the harm such acts do to the public trust and the profession. Building on the ethics theories of Sissela Bok and (...) Helen Nissenbaum, balancing tests can be developed under a mixed-rule deontology that confines online misrepresentation and exposing the private information of private people only to cases where good most clearly is served. (shrink)

Civil liberty and privacy advocates have criticized the USA PATRIOT Act (Act) on numerous grounds since it was passed in the wake of the World Trade Center attacks in 2001. Two of the primary targets of those criticisms are the Act’s sneak-and-peek search provision, which allows law enforcement agents to conduct searches without informing the search’s subjects, and the business records provision, which allows agents to secretly subpoena a variety of information – most notoriously, library borrowing records. Without attending (...) to all of the ways that critics claim the Act burdens privacy, I examine whether those two controversial parts of the Act, the section 213 sneak-and-peak search and the section 215 business records gag-rule provisions, burden privacy as critics charge. I begin by describing the two provisions. Next, I explain why those provisions don’t burden privacy on standard philosophical accounts. Moreover, I argue that they need not conflict with the justifications for people’s claims to privacy, nor do they undermine the value of privacy on the standard accounts. However, rather than simply concluding that the sections don’t burden privacy, I argue that those provisions are problematic on the grounds that they undermine the value of whatever rights to privacy people have. Specifically, I argue that it is important to distinguish rights themselves from the value that those rights have to the rights-holders, and that an essential element of privacy rights having value is that privacy right-holders be able to tell the extent to which they actually have privacy. This element, which is justified by the right-holders’ autonomy interests, is harmed by the two provisions. (shrink)

This paper analyzes court rulings on tissue samples as property and critiques objections that have been raised to the recognition of DNA samples as personal property. The cases are: Moore v. Regents of the University of California (1988, 1990), Greenberg v. Miami Children’s Research Institute (2003), and Washington University v.Catalona (2007). The paper argues that it is possible for the law to support both individual privacy and property rights in DNA, recognizing nevertheless that some unresolved questions remain, including what (...) exercising those rights means on a practical level. Finally, it offers suggestions for changes in law based on those considerations. (shrink)

The increasingly prominent role of digital technologies during the coronavirus pandemic has been accompanied by concerning trends in privacy and digital ethics. But more robust protection of our rights in the digital realm is possible in the future. -/- After surveying some of the challenges we face, I argue for the importance of diplomacy. Democratic countries must try to come together and reach agreements on minimum standards and rules regarding cybersecurity, privacy and the governance of AI.

In February 2012, the Obama White House endorsed a Privacy Bill of Rights, comprising seven principles. The third, “Respect for Context,” is explained as the expectation that “companies will collect, use, and disclose personal data in ways that are consistent with the context in which consumers provide the data.” One can anticipate the contested interpretations of this principle as parties representing diverse interests vie to make theirs the authoritative one. In the paper I will discuss three possibilities and explain (...) why each does not take us far beyond the status quo, which, regulators in the United States, Europe, and beyond have found problematic. I will argue that contextual integrity offers the best way forward for protecting privacy in a world where information increasingly mediates our significant activities and relationships. Although an important goal is to influence policy, this paper aims less to stipulate explicit rules than to present an underlying justificatory, or normative rationale. Along the way, it will review key ideas in the theory of contextual integrity, its differences from existing approaches, and its harmony with basic intuition about information sharing practices and norms. (shrink)

This paper explores the potential of data mining as a technique that could be used by malicious data miners to threaten the privacy of social network sites users. It applies a data mining algorithm to a real dataset to provide empirically-based evidence of the ease with which characteristics about the SNS users can be discovered and used in a way that could invade their privacy. One major contribution of this article is the use of the decision forest data (...) mining algorithm to the context of SNS, which does not only build a decision tree but rather a forest allowing the exploration of more logic rules from a dataset. One logic rule that SysFor built in this study, for example, revealed that anyone having a profile picture showing just the face or a picture showing a family is less likely to be lonely. Another contribution of this article is the discussion of the implications of the data mining problem for governments, businesses, developers and the SNS users themselves. (shrink)

Warren and Brandeis ' tort against invasion of privacy had chiefly a social goal: to enlist the courts to reinforce the norm of civility. Years later in Griswold v. Connecticut, the Supreme Court announced a constitutional right of privacy that was personal in focus. Here and in subsequent rulings on abortion and the " right to die," it became apparent that Warren and Brandeis ' Victorian " right to be let alone" had metamorphosed into a right to autonomy, (...) whose amoeboid contours made prediction or even description a tricky business. But privacy is an unsatisfactory proxy for autonomy, and perhaps for this reason has dwindled in importance as a rationale in these areas. Keywords: abortion, autonomy, Charles Warren, Cruzan v. Director, Missouri Department of Health, Griswold v. Connecticut, In re Quinlan, Louis Brandeis, privacy, right to die, Roe v. Wade, Supreme Court CiteULike Connotea Del.icio.us What's this? (shrink)

This chapter contains sections titled: Following a rule Practices and techniques Doing the right thing and doing the same thing Privacy and the community view On not digging below bedrock.

In July, the Department of Health and Human Services and the Office of Science and Technology Policy published an advance notice of proposed rulemaking proposing sweeping changes to the rules governing oversight of research on human subjects—changes aimed at “better protect[ing] human subjects who are involved in research, while facilitating valuable research and reducing burden, delay, and ambiguity for investigators.”1 The process is likely to amend not only the core regulation on human-subjects research , but also regulations governing vulnerable (...) subjects, IRB registration requirements, research regulations of the Food and Drug Administration, and the “privacy rule” of the .. (shrink)

U.S Courts have ruled that one’s genetic information is covered by the Fourth Amendment to the Constitution, which affords persons protection against unreasonable search and seizures of their personal property and personal space. The Genetic Information Non-Discrimination Act (GINA) protects people from discrimination in health insurance and employment based on genetic information. The European Union issued the General Data Protection Regulation, which included genetic information. Yet with the development and application of DNA identification in criminal investigations, governments have amassed the (...) genetic information of millions of people. And, with the rise of consumer genetics, especially since DNA ancestry tests went commercial in 2000, dozens of companies have amassed millions of personal DNA samples that are sold to various companies for analysis beyond their intended genealogical purpose. Where is the balance between the protection of people’s genetic information and the commercial and forensic acquisition of personal genetic data? How can genetic information be protected under the Fourth Amendment’s privacy provisions, as well as privacy laws in other countries, and yet be so whimsically distributed throughout society, so easily acquired by police, and voluntarily released to companies? (shrink)

Background Sharing anonymized/de-identified clinical trial data and publishing research outcomes in scientific journals, or presenting them at conferences, is key to data-driven scientific exchange. However, when data from scientific publications are linked to other publicly available personal information, the risk of reidentification of trial participants increases, raising privacy concerns. Therefore, we defined a set of criteria allowing us to determine and minimize the risk of data reidentification. We also implemented a review process at Takeda for clinical publications prior to (...) submission for publication in journals or presentation at medical conferences. Methods Abstracts, manuscripts, posters, and oral presentations containing study participant information were reviewed and the potential impact on study participant privacy was assessed. Our focus was on direct and indirect identifiers, such as sex, age or geographical indicators in rare disease studies or studies with small sample size treatment groups. Risk minimization was sought using a generalized presentation of identifier-relevant information and decision-making on data sharing for further research. Additional risk identification was performed based on study participant/personnel parameters present in materials destined for the public domain. The potential for participant/personnel identification was then calculated to facilitate presentation of meaningful but de-identified information. Results The potential for reidentification was calculated using a risk ratio of the exposed versus available individuals, with a value above the threshold of 0.09 deemed an unacceptable level of reidentification risk. We found that in 13% of Takeda clinical trial publications reviewed, either individuals could potentially be reidentified or inappropriate data sharing plans could pose a data privacy risk to study participants. In 1/110 abstracts, 58/275 manuscripts, 5/87 posters and 3/58 presentations, changes were necessary due to data privacy concerns/rules. Despite the implementation of risk-minimization measures prior to release, direct and indirect identifiers were found in 11% and 34% of the analysed documents, respectively. Conclusions Risk minimization using de-identification of clinical trial data presented in scientific publications and controlled data sharing conditions improved privacy protection for study participants. Our results also suggest that additional safeguards should be implemented to ensure that higher data privacy standards are met. (shrink)

Background: For patients admitted to hospital both pastoral care and privacy or confidentiality are important. Rules related to each have come into conflict recently in the US. Federal laws and other rules protect confidentiality in ways that countermand hospitals’ methods for facilitating access to pastoral care. This leads to conflicts and poses an unusual type of dilemma—one of conflicting values and rights. As interests are elements necessary for establishing rights, it is important to explore patients’ interests in (...) privacy compared with their desire for attention from a cleric.Aim: To assess the willingness of patients to have their names and rooms included on a list by religion, having that information given to clergy without their consent, their sense of privacy violation if that were done and their views about patients’ privacy rights.Methods and participants: 179 patients, aged 18–92 years, admitted to hospital in an acute care setting, were interviewed and asked about their preferences for confidentiality and pastoral support.Results: Most patients did not want to be listed by religion; 58% did not think hospitals should give lists to clergy without their consent and 84% welcomed a visit by their own clergy even if triggered from a hospital list.Conclusions: Values related to confidentiality or privacy and pastoral care were found to be inconsistent and more complicated than expected. Balancing the right to privacy and the value of religious support continue to present a challenge for hospitals. Patients’ preferences support the importance of providing balance in a way that protects rights while offering comprehensive services. (shrink)

Even though health care provider reporting of diseases to public health authorities is common, often there is under-reporting by providers, including for notifiable diseases; frequently, under-reporting occurs by wide margins. Two causal factors for this under-reporting by providers have been that: disclosing data may violate their patients’ privacy, and disclosed data may be used to evaluate their performance. A reluctance to disclose information due to privacy concerns exists despite the U.S. Health Insurance Portability and Accountability Act Privacy (...) Rule permitting disclosures of personal health information for public health purposes without patient authorization. On the other hand, such patient privacy concerns are somewhat justified: there have been documented breaches of patient information from public health data custodians.A common way to address this privacy issue is to de-identify patient data before it is disclosed to public health. (shrink)

This paper weaves together a number of separate strands each relating to an aspect of Wittgenstein’s Philosophical Investigations. The first strand introduces his radical and incoherent idea of a private object. Wittgenstein in § 258 and related passages is not investigating a perfectly ordinary notion of first person privacy; but his critics have treated his question, whether a private language is possible, solely in terms of their quite separate question of how our ordinary sensation terms can be understood, in (...) a philosophical context, to acquire meaning. Yet it is no part of his intention to demonstrate logically that ordinary sensations are not intrinsically meaningful. This is a tempting yet misleading picture, the picture also expressed through the idea of Augustine’s child who is conceptually articulateprior to learning how to talk. This picture lies behind the born Crusoe, an idea at the centre of the dichotomy between language as essentially shared and essentially shareable, a dichotomy considered here to result from a misconception of two quite separate but related aspects of Wittgenstein’s treatment offollowing a rule. The notion of a misleading picture, in both its pre-theoretical and philosophical aspects, also plays a crucial role in a treatment of Saul Kripke’s well-known “Postscript: Wittgenstein and Other Minds.”. (shrink)

Built-in privacy has for too long been neglected by regulators. They have concentrated on reacting to violations of rules. Even imposing severe fines will however not address the basic issue that preventative privacy protection is much more meaningful. The paper discusses this in the context of the International Working Group on Data Protection in Telecommunications (“Berlin Group”) which has published numerous recommendations on privacy-compliant design of technical innovations. Social network services, road pricing schemes, and the distribution (...) of digital media content have figured prominently in the group’s latest working papers. More recently, a judgment of the European Court of Human Rights has thrown light on weaknesses in the protection of patients’ data in hospitals that requires urgent action by designers of IT systems. Built-in privacy is no magic button, no panacea, but it has turned out to be a necessary condition for meaningful privacy protection. (shrink)

This essay focuses on the interrelationship of regulation and private life in human rights. It argues three main points. (1) Article 8 connects the question of protection of private lives and privacies with the question of their management. Thus, Article 8 orients regulatory practices to private lives and privacies. (2) Article 8’s holders are autonomous to the extent that laws respect their private lives and privacies. They are not autonomous in a ‘pre-political’ sense, where we might expect legal rules (...) to protect an already autonomous private life or privacy. (3) Article 8 does not simply prohibit or permit acts. In certain cases, it also ‘enables’ acts. Then, this essay introduces the idea of oikopolitics. This idea allows us to capture these three points in a useful manner. By this idea, this essay means the context (a) where the interpretation of privacy reaches out to broader social practices and norms and (b) where the status of rights-holders living their private lives makes them objects of attention. (shrink)

Most readers of the Investigations take skepticism as a target of Wittgenstein’s remarks, something to be refuted by means of a clear grasp of our criteria. Stanley Cavell was the first to challenge that consensual view by reminding us that our criteria are constantly open to skeptical repudiation, hence that privacy is a standing human possibility. In an apparently similar vein, Saul Kripke has argued that a skeptical paradox concerning rules and meaning is the central problem of the (...) Investigations – and one that receives a skeptical solution. Following the orthodoxy, however, Kripke does not take privacy as a real threat but instead reads Wittgenstein as offering an argument against its very possibility. This paper offers a critical assessment of Kripke’s and Cavell’s readings, and concludes by delineating an understanding of our linguistic practices that acknowledges the seriousness of skepticism while avoiding the kind of evasion shared by Kripke and the orthodoxy, enabling us to see agreement and meaning as continual tasks whose failure is imbued with high existential costs. (shrink)

Regulation No 17: First Regulation implementing Articles 85 and 86 of the Treaty set out that in carrying out the duties assigned to it by Article 89 and by provisions adopted under Article 87 of the Treaty, the officials authorized by the EU Commission were empowered inter alia to enter any premises, land and means of transport of undertakings. Council Regulation (EC) No 1/2003 of 16 December 2002 on the implementation of the rules on competition laid down in Articles (...) 81 and 82 of the Treaty has expanded Commission’s powers stating that Commission can by decision order an inspection to be conducted in any other premises, land and means of transport, including the homes of directors, managers and other members of staff of the undertakings and associations of undertakings concerned. Such an expansion of the investigative powers of the Commission raises a question of the balance between effectiveness of the EU competition law and a person’s right to privacy, which is guaranteed to everyone by the Article 8 of the European Convention on Human Rights. Nevertheless this right is not absolute and the conditions for the possible limitations of the exercise of it are enshrined in paragraph 2 of the same article. For this reason the aim of this article is to find out whether Commission’s power to carry out searches in private homes meet the requirements set in Article 8(2) of the Convention, i.e., whether the Commission’s power to conduct such searches could be justified under the ECHR Article 8(2). In this study, the authors analyse the Commission’s extended investigative powers, clarify what is covered by the concept of “privacy”, evaluate the requirements set in Article 8(2) of the Convention, analyse conditions of exercising Commission’s extended investigative power and thus qualify if the latter satisfies the requirements set in Article 8(2) of the ECHR. (shrink)

James Rule is puzzled by the ‘idiosyncratic’ approach that I take to the philosophical study of privacy. As evidence for this idiosyncracy, he cites my relative indifference to the distinction between consequentialist and deontological perspectives on privacy although these differences are proof of ‘intricate, yet enormously consequential intellectual tensions’. My choice of philosophical topics is ‘unsystematic’ and more a reflection of my own ‘intellectual hobby-horses’ than a ‘well-worked-out view of what students most need to know’. Finally, Rule concludes, (...) because ‘the most important privacy questions are excruciating’, we need ‘more systematic guidance than is provided here’. I am grateful to the editors for the chance to respond to these complaints. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 16-17, October 2012.

The Supreme Court’s reversal of the right to abortion has significantly changed reproductive rights in the United States, and adversely affected the lives of potentially pregnant persons. The political fragility of the privacy right to abortion also raises questions about the practice and epistemic rules of American constitutionalism itself. In this essay, I situate the history of privacy under the Fourteenth Amendment’s due process clause in the tradition of legal reasoning. With Ludwig Wittgenstein’s On Certainty, I argue (...) that the majority in Dobbs v. Jackson (2022) departs from this tradition. The upshot of this departure is that we now have a new interpretive language game battling a long established language game of interpretation–battling, that is, a constitutional tradition–in a contest to redefine how disagreement is transacted among justices and between the people and their government. (shrink)