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)

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)

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)

THIS PUBLICATION IS AVAILABLE OPEN ACCESS. 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)

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)

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)

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)

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.

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.

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.

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.

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)

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.

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)

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)

Watson’s monograph, The Right to Know: Epistemic Rights and Why We Need Them, clearly, succinctly and deftly introduces the notion of the right to know or epistemic rights to the epistemology literature. She does this partly by connecting the conclusions and theoretical motives of the moral and legal rights literature to the epistemology literature. In part, motivated by this book’s great value, I present two objections to some of the book’s central claims. The first objection is (...) that there is tension between (i) the book’s claim that information distribution is a basic epistemic duty that epistemic rights generate and (ii) the book’s claim that epistemic rights are complied with if subjects receive epistemic goods such as understanding and knowledge that respect their final value. The second objection is that the dyadic nature of Watson’s account of epistemic rights violation does not comport with plausible cases in which non-dominant groups’ epistemic rights have been violated and as a consequence the book’s claim that epistemic rights provide those who wield them an especially forceful rhetorical tool requires further motivation. (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)

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.

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)

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.

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)

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)

The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in (...) recent years fueled in large part by the rise and rise of the importance of personal autonomy in health care ethics, and by domestic and international health law. The right not to know has been acknowledged in at least two important international legal instruments. For example, the UNESCO Universal Declaration on the Human Genome and Human Rights, Article 5c provides: “The right of every individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected.”. (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)

The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to (...) the patient’s relatives who, without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be “activated” by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons. (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)

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)

The ‘right not to know’ (RNTK) can be used by patients as a safeguard against the effects that certain medical information can have on their well-being. At first glance, one might reason it suitable for a patient to enact their RNTK. However, although Davies states that RNTK gives people the ability to both protect themselves from self-perceived harm and exercise their autonomy, I will argue that ‘not knowing’ hinders patients’ ability to exercise their existential freedom and represents what (...) Sartre calls an instance of ‘bad faith’. Davies argues that the RNTK takes precedence over many related issues and objections associated with a patient’s decision to implement such a resolution.1 Fundamentally, the RNTK gives patients power to protect themselves from subjective harm and to exercise their autonomy. In most cases, objectors of RNTK cite the negative impact on the patient’s state of health, which affects not only the patient but also those persons who would also be negatively affected by patient health outcomes. For the majority of objectors, patients have moral obligations to lessen the degree of burden on others, which refusal can initiate. However, Davies concludes, ‘…the burden placed on others is not sufficiently significant …. (shrink)

There is a common view in medical ethics that the patient's right to be informed entails, as well, a correlative right not to be informed, i.e., to waive one's right to information. This paper argues, from a consideration of the concept of autonomy as the foundation for rights, that there can be no such ‘right’ to refuse relevant information, and that the claims for such a right are inconsistent with both deontological and utilitarian ethics. Further, (...) the right to be informed is shown to be a mandatory right (though not a welfare right); persons are thus seen to have both a right and a duty to be informed. Finally, the consequences of this view are addressed: since the way in which we conceptualize our problems tends to determine the actions we take to resolve them, it is important properly to conceptualize patients' requests not to be informed. There may be many reasons for acting in accord with such a request, but it is a mistake to conceptualize one's act as ‘respecting a right possessed by persons’. Keywords: medical ethics, informed consent, autonomy, information-waivers, rights, obligations CiteULike Connotea Del.icio.us What's this? (shrink)