We speak of the right to know with relative ease. You have the right to know the results of a medical test or to be informed about the collection and use of personal data. But what exactly is the right to know, and who should we trust to safeguard it? This book provides the first comprehensive examination of the right to know and other epistemic rights: rights to goods such as information, knowledge (...) and truth. These rights play a prominent role in our information-centric society and yet they often go unnoticed, disregarded and unprotected. As such, those who control what we know, or think we know, exert an influence on our lives that is often as dangerous as it is imperceptible. Beginning with a rigorous but accessible philosophical account of epistemic rights, Lani Watson examines the harms caused by epistemic rights violations, drawing on case studies across medical, political and legal contexts. She investigates who has the right to what information, who is responsible for the quality and circulation of information and what epistemic duties we have towards each other. This book is essential reading for philosophers, legal theorists and anyone concerned with the protection and promotion of information, knowledge and truth.. (shrink)

Over the years a number of countries have abolished anonymous gamete donation and shifted toward open-identity policies. Donor-conceived children are said to have a fundamental “right to know” the identity of their donor. In this article, we trace the arguments that underlie this claim and question its implications. We argue that, given the status attributed to the right to know one's gamete donor, it would be discriminatory not to extend this right to naturally conceived children (...) with misattributed paternity. One way to facilitate this would be through routine paternity testing at birth. While this proposal is likely to raise concerns about the conflicting interests and rights of other people involved, we show that similar concerns apply to the context of open-identity gamete donation. Unless one can identify a rational basis for treating the two groups differently, one's stance toward both cases should be the same. (shrink)

The “best-medical-interests” standard for reporting findings does not go far enough. Research subjects have a right to know about any comprehensible piece of information about them that is generated by research in which they are participating. An even broader standard may sometimes be appropriate: if subjects agree to accept information that they may not understand, then all information may be disclosed.

Over the years a number of countries have abolished anonymous gamete donation and shifted toward open-identity policies. Donor-conceived children are said to have a fundamental “right to know” the identity of their donor. In this article, we trace the arguments that underlie this claim and question its implications. We argue that, given the status attributed to the right to know one's gamete donor, it would be discriminatory not to extend this right to naturally conceived children (...) with misattributed paternity. One way to facilitate this would be through routine paternity testing at birth. While this proposal is likely to raise concerns about the conflicting interests and rights of other people involved, we show that similar concerns apply to the context of open-identity gamete donation. Unless one can identify a rational basis for treating the two groups differently, one's stance toward both cases should be the same. (shrink)

The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book considers (...) the right to know and the right not to know about your own and others’ genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media. (shrink)

This volume contains essays which cover a range of aspects in the debate over genetic testing. It looks at both the advantages and disadvantages involved in knowing or not knowing whether one is a carrier of certain genetic traits.

The people's right to know and press rights to gather and publish information remain dominant justifications for controversial media activities. Yet, the power of the media to set the agenda for public discourse in our country warrants a careful analysis of these rights, their corresponding responsibilities, and their moral limits. This article examines the right to know and press freedom from the perspective of their shared purpose, facilitation of informed decision making. This article also demonstrates moral (...) justification of limits on right to know and press freedom based on traditional ethics theories and media impact on public discourse. (shrink)

While in this paper I focus on adoptees, my argument is applicable to donor-conceived children and children of misattributed paternity. I address some of the noted risks of closed adopted and the benefits of open adoption, which is more in keeping with Article 7 of the United Nations Convention on the Rights of the Child (CRC), which provides all children with a right to know about their genetic parents and which the Australian government ratified in 1980.

A commentary on “The Ethics of Anonymous Gamete Donation: Is There a Right to Know One's Genetic Origins?,” by Inmaculada de Melo‐Martin, and “Autonomous Choice and the Right to Know One's Genetic Origins,” by Vardit Ravitsky, bothin the January‐February 2014 issue.

In recent years, the right of employees to know about health hazards in the workplace has emerged as a major issue in occupational health policy. A general consensus has gradually evolved that there is a right to know, and correlatively that there is a moral obligation to disclose relevant information to workers. For example, the National Institute for Occupational Safety and Health, and several other U.S. federal agencies, informed the U.S. Senate as early as July 1977 (...) that ‘workers have the right to know whether or not they are exposed to hazardous chemical and physical agents regulated by the Federal Government.’ In 1980, the Occupational Safety and Health Adminstration promulgated regulations guaranteeing workers access to medical and exposure records. (shrink)

After the initial surge in cases of coronavirus, the outbreak has been managed differently in different countries. In the USA, it has been managed in many different ways between states, cities and even counties. This disparity is slowly becoming more and more pronounced with the advent of antibody testing. Although many argue over the potential merits of antibody testing as an immunity passport to allow the economy to restart, there are other implications that stand at the heart of the bioethical (...) debate that are often overlooked. Particularly with COVID-19, there are many uncertainties and the discourse alone of antibodies presumes misinformation that may outweigh the epidemiological benefits of antibody testing. Although this paper does not seek to eliminate antibody testing, it does highlight the need for appropriate counselling both on a personal level with each patient but on a more global level. This moral standard of appropriate education is key to allowing the continued autonomy needed during this pandemic. (shrink)

This article was developed as part of the forthcoming special issue on "Reparations" for the Journal of Social Philosophy and was accepted (with minor revisions) by the guest editors Christina Nick and Susan Stark in November 2021. The special issue article is available online open access for early view. -/- Abstract: The United Nations Commission on Human Rights acknowledges the Right to Know as part of state obligations to combat impunity and thereby protect and promote human rights in (...) the aftermath of “serious crimes under international law”. In light of such an institutionally acknowledged epistemic right of victims, this paper explores the normative foundations of the idea of epistemic reparation in the aftermath of genocide. I argue that such epistemic reparation requires not only fulfilment of the informational needs of victims, survivors and descendants, including access to knowledge about the violations. By taking into account epistemic injuries, which are part and parcel of genocide, it ought to also re-establish victims’ epistemic standing. This is because genocide is enabled, justified and even prescribed through a genocidal epistemology involving the propagation of falsehoods and misinformation about social reality as well as abuses of epistemic authority and epistemic authoritarianism. Hence, epistemic reparation ought to correct the dysfunctional epistemic practices that underlie and sustain a genocidal epistemology. It thereby provides victims, survivors and descendants with epistemic recognition that has been systematically withdrawn from them, making epistemic reparation a crucial element of restorative justice. (shrink)

This article uses a case study to examine the conflicting rights of the patient to know a clinician;s HIV status and the clinician's right to privacy.

In “The Ethics of Anonymous Gamete Donation: Is There a Right to Know One's Genetic Origins?,” Inmaculada de Melo‐Martín deconstructs the interests the right is supposed to protect. She argues that these interests are not set back or thwarted when one has no access to one's genetic origins. The basis of her argument is that we lack robust empirical evidence that donor‐conceived individuals suffer certain alleged harms, and that even when such harms are present, they do not (...) provide strong enough justification to ground the right.Indeed, the research on the needs, preferences, and well‐being of donor‐conceived individuals is scant. In fact, we lack robust empirical evidence regarding all aspects of donor conception. I argue, however, that the right to know one's genetic origins does not rest on empirical evidence. Some donor‐conceived individuals who are unable to know their genetic origins may suffer great harms. Others may suffer no harm at all. But all are treated wrongly when they are deprived of the ability to access information about their genetic origins. They are deprived of an important aspect of their autonomy: the liberty to choose what meaning they assign to the genetic components of their identity. (shrink)

There are times when two essential human rights may appear to be in conflict, or need to be balanced against one another. This paper examines the right of a party, such as officials, a group of people or an individual, to ‘privacy and confidentiality’ when others may have a conflicting ‘right to know’ about them. Although similar conflicts have been studied by other researchers, there is still controversy over the rightful balance in situations driven by new information (...) and communication technologies. I conducted a survey on the attitude of college students to the privacy right versus the right to know using an actual case at the university. First, I asked the students if they believed protecting the privacy of a married teacher who had fathered a child with a student was more important than the right of the school to know. Second, I asked if they believed a child born to a single mother in such a relationship has the right to know about his father, or the single mother has the right to keep that information confidential. Third, I asked the students if they believed in general that the ‘right to privacy and confidentiality’ was more important or the ‘right to know’. This paper reports on the results of this survey on 222 students at an international university in Japan. (shrink)

Journalists are regularly criticized for causing harm to others, such as invading privacy, printing, or airing offensive material, and so forth. Although most sensitive journalists readily acknowledge these harms, they frequently argue that the pursuit and coverage of news is nonetheless justified because it fulfills a greater moral purpose - satisfaction of the public's right to know. This article argues that although "the public s right to know" does justify some harmful journalistic behavior, too often the (...) phrase is used without the conceptual precision necessary to justify the competing harm. That is, journalists often confuse having a right to know with having an interest or curiosity in knowing and such conceptual confusion too often allows journalistic behavior to occur that would otherwise be seen as unethical. (shrink)

As the basis for federal and state freedom of information laws, the legal idea of a public right to know has been a blessing. As the often-invoked moral justification for the press's right to publish, however, it is dangerous, because an unfettered right to know would result in restrictions on the press's right to determine what to publish. By acknowledging their moral responsibility to provide audiences with information based on their need to know, (...) journalists can avoid the hazards of arguing that an unrestricted public right to know is the foundation of press freedom. (shrink)

This article places the concept of "right to know," which is normally associated with law, in a moral framework. It outlines multiple meanings of the concept, emphasizing the institutional nature of "right to know." Then the article imbeds this understanding in moral thinking, including a discussion of the moral elements of rights, and applies that understanding in specific journalistic situations.

This article examines the recent introduction of forced ultrasound-beforeabortion measures in select U.S. states as an intervention of gendered biopower. These measures are drafted based on model legislation entitled the Woman’s Right to Know Act. Such legislation exploits a discourse of women’s health, but invests in fetal “life” by regulating the behavior of pregnant women so as to promote the carrying of pregnancies to term; the legislation also represents childbirth and motherhood as in the interest of women’s health. (...) Ultimately, I contend that Right to Know measures give the state permission to override the choices, rights, and interests of the population of pregnant women as a whole in an attempt to “protect” and optimize a supposedly vulnerable fetal population. (shrink)

Starting in late 2011, public discourse increased around several similar pieces of proposed and enacted legislation that began to appear in the United States. These instruments, currently at different stages in their respective legislatures, impose or intend to impose restrictions on the conditions under which an abortion can be provided to a woman seeking to terminate her pregnancy.1 Among this set of instruments is state-level legislation, modeled after the Woman’s Ultrasound Right to Know Act, a law and policy (...) guide developed by the pro-life/anti-choice group, Americans United for Life (AUL). This guide and the legislation that is modeled on it state that a woman seeking an abortion cannot give “informed .. (shrink)

This study compares the codes of media ethics adopted by the PCCPress Complaints Commission, the IFJInternational Federation of Journalists and the SPJSociety of Professional Journalists based on the claim that it is the public's right to know, and examines the origins of this concept. A new approach is presented here which falls between the liberal-democratic approach on the one hand and on the other, the extreme ultra-Orthodox approach that claims that it is the public's duty not to (...) class='Hi'>know. This new approach which indicates that it is the public's duty to know has evolved from the analysis of Jewish texts from Biblical times and from the study of events in Jewish community life throughout the world. This novel approach is likely to effect a change in the contents of broadcasts and in the boundaries of media ethics. (shrink)

In the original publication the title reads “The Right to Know and the Right Not to Know Revisited: Part One”. The paper consisted of both Part One and Part Two hence the title has to be corrected.

In lieu of an abstract, here is a brief excerpt of the content:Significant Interests and the Right to KnowReuven Brandt (bio)1. IntroductionDaniel Groll's book Conceiving People (2021) attempts a novel and insightful defence of why individuals ought to choose open over anonymous gamete donation, barring any special circumstances. In broad strokes, the overall argument proceeds by defending three main claims: (1) that failing to disclose to children that they are donor-conceived is morally problematic, (2) that children who are informed (...) that they are donor-conceived (either intentionally by their social parents or otherwise) are likely to have a worthwhile, significant, subjective interest1 in having knowledge about their gamete donor(s), and (3) that parents have a duty to advance their children's worthwhile subjective significant interests. Groll's account departs from other criticisms of anonymous gamete donation in that it does not rest on the view that knowledge about one's genetic progenitors is essential to self-knowledge, identity formation, or other elements of wellbeing for creatures like us. The view thus attempts to avoid the pitfalls plaguing other criticisms of anonymous gamete donation, which tend to rely on controversial (and likely false) claims of genetic essentialism and/or genetic exceptionalism.Groll's thesis rests on the much more modest (and likely correct) claim that seeking information about one's genetic progenitors is one of many permissible, fruitful, and valuable routes to identity formation. According to Groll, it just so happens that a large portion of donor-conceived individuals aware of the absence of biological ties to one or more social parents choose this route to identity formation. And this empirical fact combined with plausible views about parents' obligations to promote their offspring's wellbeing gives prospective pro-creators strong reason to choose open donors over anonymous donors.Although many aspects of the picture Groll paints are attractive, I remain unconvinced that the overall argument succeeds. My criticism of the argument is multipronged. I am skeptical that failing to disclose to a child that they were donor-conceived and/or failing to disclose information to a child that they are [End Page 201] likely to find important violates the parental duty to build intimate relationships with one's offspring. This shifts the force of Groll's argument to the empirical claim that donor-conceived children are likely to have a significant subjective interest in knowing information about their biological relations. As I will show, the empirical evidence for this claim is not as strong as Groll presumes. In the absence of a deontic argument for disclosure, Groll must provide more robust empirical evidence that anonymous gamete donation is likely to result in off-spring with their weighty interests frustrated, or else argue that the risk is not worth taking. These are not fatal flaws but show that more empirical and normative work needs to be done to defend this line of argument.A more serious set of worries arise in response to Groll's claim that the interest that donor-conceived individuals have in genetic information is likely to be significant. Little is said about what constitutes a significant interest, except that interests fall along a linear spectrum and that the significance of an interest is a factor of "the space, so to speak, it takes up in a person's mental economy (do they think about it a lot?) and the extent to which they organize their lives around it" (2021, 63). My worries here are three-fold. First, it is unclear whether the empirical data support the claim that donor-conceived individuals are likely to have an interest in genetic knowledge that is significant in the sense that it occupies a large portion of their mental energy and is a locus around which they organize their lives. Second, there is scant discussion about whether an interest can become morally problematic (and so no longer worthwhile on Groll's account) if it is given too much weight. I will argue that a plausible reading of Groll's account requires that we treat overvalued interests as no longer worthwhile. Consequently, Groll's argument risks presuming the kind of genetic chauvinism—the view that genetic knowledge is essential to wellbeing—that he seeks to reject. Third, if... (shrink)

A growing number of jurisdictions hold that gamete donors must be identifiable to the children born with their eggs or sperm, on grounds that being able to know about one's genetic origins is a fundamental moral right. But the argument for that belief has not yet been adequately made.

The vast majority of gamete donations worldwide are made anonymously, and in some countries, including Spain, France, and Denmark, the anonymity of donors is explicitly protected by law. Nonetheless, a growing number of countries have called into question the morality of such practices and are enacting laws allowing children access to identifying information about their gamete donor. A significant reason for the growing legislative support for nonanonymous gamete donations is the belief that donor‐conceived children have a fundamental moral right (...) to know their genetic origins and that the right should be legally protected. A variety of factors, such as the increasing number of children born by means of gamete donation, advances in genetic science and technology that make it easy to discover the identity of a person's genetic parents, and the widespread belief that genetic information is important for protecting people's health, have made this alleged right quite salient, even leading some to challenge the ethical appropriateness of gamete donation practices altogether. Often, however, this right is assumed rather than explicitly justified. The purpose of this paper is to call into question the ethical justifications that are often thought to ground a right to know one's genetic origins.Proponents of a right to know this information usually argue that such a right protects at least three vital interests: the interest of donor‐conceived people in having strong family relationships, their health interests, and their interest in forming a healthy identity. These different interests might be protected by different aspects of the right to know one's genetic origins: knowing one's mode of conception, accessing medically relevant information, and accessing identifying information about one's genetic parents. I will discuss each of these interests and explore whether and how they might be set back by an individual's lack of access to information about his or her genetic parentage. I will also evaluate whether donor anonymity policies are, as many of their opponents argue, morally impermissible because they fail to protect these important interests. (shrink)

Bioethicists have for quite some time discussed the right to know and the right not to know personal health information, such as genetic information acquired in health care and incidental health-related findings in research. Several international ethical guidelines explicitly defend these rights.My own interest in these matters stems from my participation in ethics-related research tied to a longitudinal screening study on Type I diabetes involving young children. A few of the participating parents did not want to (...) be informed if the study revealed their child had a high risk of developing diabetes. This response was troublesome, not least since the information would concern the child's and not the parents’ health. Our inclination was that there cannot be a right not to know that should be granted without qualifications. Furthermore, other contextual factors, e.g., that parents experienced pressure to participate and felt concern about some of the personal data handled in the study, gave reason to question whether autonomous decisions were made regarding participation. The autonomy of their expressed desire not to know was therefore questionable. (shrink)

This paper defends the right not to know personal health information, while it discards the right of research participants to receive individual research results. Disagreement regarding the right not to know stems from two different conceptions of autonomy, leading to opposing normative conclusions. Researchers occasionally have good reason to inform research participants about incidental findings in spite of the absence of a right to know such information. Such decisions have to be made by (...) health care personnel and researchers on a case by case basis, although external support for the decisions may be available. (shrink)

Quantitative health risk assessment is a procedure for estimating the likelihood that exposure to environmental contaminants will produce certain adverse health effects, most commonly cancer. One instance of its use has been a California air toxics public “right-to-know” law. This article examines the ways in which credible health risk measurements were produced and challenged during the implementation of the California public policy. Fieldwork and documentary analysis finds that stakeholders negotiated within the formal constraints of the risk assessment procedures (...) but still expressed their competing visions for the implementation of the risk communication policy. The abstract results of the method were contextualized according to different time frames and allocations of uncertainty. Furthermore, the article demonstrates that the political process privileged consistency of measurement over accuracy, revealing political negotiations at a fundamentally technical level. The struggle and variation in interpretations can be explained best by the demand to organize the program around the discordant values of democratic accountability and technical efficiency. (shrink)

Accidental human immunodeficiency virus (HIV) infection of patients in health care settings raises the question about whether patients have a right to expect disclosure of HIV/AIDS diagnoses by their health workers. Although such a right – and the correlative duty to disclose – might appear justified by reason of standards of informed consent, I argue that such standards should only apply to questions of risks of and barriers to HIV infection involved in a particular medical treatment, not to (...) disclosure of personal diagnoses. Because the degree of risk of HIV infection is low and disclosure would also have damaging consequences for health workers, and because patient protection is available in other ways, it is argued that no such generalized right should be recognized. Keywords: duty to disclose, HIV infection, HIV/AIDS diagnosis, informed consent, right to know CiteULike Connotea Del.icio.us What's this? (shrink)

This paper argues that the deepening and widening of existing worker rights in work environment issues is a necessary condition to promote much needed reform in present day industry, and to reduce the frequency and severity rate of accidents and incidence of industrial disease.

Even the most ardent defenders of a legal right to freedom of the press are likely to regard this right as having limitations; but how precisely the right should be limited is a matter of considerable disagreement. This issue is at least partly moral in character: it concerns the moral acceptability of laws which regulate or protect the activities of members of the press. I propose here to address this moral issue, and to do so within the (...) broader framework of considering whether establishing a legal right to freedom of the press—regardless of how it might be limited—is justifiable on moral grounds. In pursuing this investigation, I will devote special attention to familiar claims about the relation between press rights on the one hand, and “the people's right to know” on the other. (shrink)

This article addresses the child’s right to know their genetic origins in mitochondrial donation. It focuses on the UK’s public debate on mitochondrial replacement techniques and examines the claims-making activities that shaped the donor information regulations. During the public consultation, downplaying the significance of the mitochondria helped distinguish mitochondria donors from gamete donors and determine their relational status with the resulting child. As a result, according to the Mitochondrial Donation regulations, mitochondria donors, unlike gamete donors, will not be (...) required to be identifiable to the resulting child. I argue that, in the UK, similar to donor conception, public understanding of mitochondrial donation is shaped by a “calculus of genes”: simplified accounts of how genes determine the resulting child’s characteristics and identity. While the donor conception regulations ascribe social meaning to the passage of genes, the mitochondria regulations strip the social meaning away from the donation based on the assumption that the genetic contribution made by the donor is quantitatively insignificant in influencing the identity of the resultant offspring. The nature of the genetic material itself should not be considered as a privileged standpoint from which to decide on social meaning of the donation or the rights attached to it. (shrink)

This paper will consider the right not to know in the context of psychiatric disorders. It will outline the arguments for and against acquiring knowledge about the results of genetic testing for conditions such as breast cancer and Huntington’s disease, and examine whether similar considerations apply to disclosing to clients the results of genetic testing for psychiatric disorders such as depression and Alzheimer’s disease. The right not to know will also be examined in the context of (...) the diagnosis of psychiatric disorders that are associated with stigma or for which there is no effective treatment. (shrink)