Narrative Identity in Third Party Reproduction: Normative Aspects and Ethical Challenges

In the last few decades, assisted reproduction has introduced new challenges to the way people conceive and build their families. While the numbers of donor-conceived (DC) individuals have increased worldwide, there are still many controversies concerning access to donor information. Is there a fundamental moral right to know one’s genetic background? What does identity in DC families mean? Is there any relationship between identity formation and disclosure of genetic origins? These questions are addressed by analysing core regulatory discourse (ethical recommendations and codes of practice). This analysis shows that the notion of narrative identity is suitable for defining and answering these questions. This review analyses the meaning of resemblance in DC families and the way donors are selected following affinity-ties and discusses disclosure strategies and agreements. As a preliminary conclusion, it could be said that, in the field of third-party reproduction, knowing about the donor conception significantly contributes towards the development of a narrative identity and also serves as a moral basis for the child’s right to know.     

The Principle of Self-Determination and National Minorities

The principle of self-determination is one of the basic principles of international law but as a right, it is only granted to peoples, defined as whole populations of internationally recognized territories. Thus, the claims to self-determination voiced by national minorities are not seen as legitimate by international legal standards. This article examines the underlying assumptions of the principle of self-determination and by combining legal and moral arguments, tries to show that withholding this right from national minorities is unjustified. If one of the reasons why minorities are not granted the right is that they are entitled to collective rights, one would have to maintain that peoples have the relevant characteristics for the possessing group rights while minorities do not, and this view cannot be sustained. The right to self-determination should be understood as abroad notion and the restrictive view according to which the right only applies to colonial peoples and its implementation amounts to independent statehood, should be rejected. Furthermore, it should be noted that although the internal dimension of self-determination can ground a right to freedom from external interference, this freedom is a matter of degree; therefore, minorities can exercise the right to self-determination without this leading to secession or break-up of the state.     

The right to genetic ignorance confirmed

One of the much debated issues around the evolving human genetics is the question of the right to know versus the right not to know. The core question of this theme is whether an individual has the right to know about her own genetic constitution and further, does she also have the right to remain in ignorance. Within liberal traditions it is usually held that people, if they so wish, have the right to all the knowledge available about themselves. This right is based on the value of autonomy or on the right of self-determination, and it is sometimes partly justified as a countermeasure to the authorities' control over people. I do not wish to deny the right to genetic knowledge (about oneself). I think that its existence is self-evident. The argument I want to put forth in this paper is that in liberal societies we should acknowledge people's right to remain in ignorance as well. The only reason for not doing this would be that grave harm to others would follow if people were allowed to make these seemingly self-regarding decisions. Arguments presented against the right to ignorance are twofold. First there are those arguing against the right to ignorance on the grounds of harm to others, that is, philosophers who do not deny people's right to ignorance in self-related matters but wish to state that genetic ignorance causes harm to others, and this is one of the most commonly accepted reason for restricting people's freedom. The other line of argument flows from the Kantian view that not even merely self-regarding foolishness (in the eyes of others) should be allowed.     

Frozen embryos, genetic information and reproductive rights

Recent ethical and legal challenges have arisen concerning the rights of individuals over their IVF embryos, leading to questions about how, when the wishes of parents regarding their embryos conflict, such situations ought to be resolved. A notion commonly invoked in relation to frozen embryo disputes is that of reproductive rights: a right to have (or not to have) children. This has sometimes been interpreted to mean a right to have, or not to have, one's own genetic children. But can such rights legitimately be asserted to give rise to claims over embryos? We examine the question of property in genetic material as applied to gametes and embryos, and whether rights over genetic information extend to grant control over IVF embryos. In particular we consider the purported right not to have one's own genetically related children from a property‐based perspective. We argue that even if we concede that such (property) rights do exist, those rights become limited in scope and application upon engaging in reproduction. We want to show that once an IVF embryo is created for the purpose of reproduction, any right not to have genetically‐related children that may be based in property rights over genetic information is ceded. There is thus no right to prevent one's IVF embryos from being brought to birth on the basis of a right to avoid having one's own genetic children. Although there may be reproductive rights over gametes and embryos, these are not grounded in genetic information.     

What can we Learn from Patients’ Ethical Thinking about the right ‘not to know’ in Genomics? Lessons from Cancer Genetic Testing for Genetic Counselling

This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer (Lynch Syndrome). 50 were invited to participate (42 were tested; eight declined genetic testing). 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; the idea of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow ‘common sense’ were judged to be imprudent. Family members who declined testing were discussed negatively by participants. The article addresses what is ethically problematic about how test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners’ decisions by expressing a preference for or defending choice over responsibility. The ‘right not to know’ seemed an important moral construct to help ethically manage unpopular decisions made by close family who declined testing. In light of this research, the erosion of the ‘right not to know’ in the genomic age could have subtle yet profound consequences for family relationships.     

HUMAN REPRODUCTIVE CLONING: A CONFLICT OF LIBERTIES

Proponents of human reproductive cloning do not dispute that cloning may lead to violations of clones' right to self-determination, or that these violations could cause psychological harms. But they proceed with their endorsement of human reproductive cloning by dismissing these psychological harms, mainly in two ways. The first tactic is to point out that to commit the genetic fallacy is indeed a mistake; the second is to invoke Parfit's non-identity problem. The argument of this paper is that neither approach succeeds in removing our moral responsibility to consider and to prevent psychological harms to cloned individuals. In fact, the same commitment to personal liberty that generates the right to reproduce by means of cloning also creates the need to limit that right appropriately. Discussion of human reproductive cloning ought to involve a careful and balanced consideration of both the relevant aspects of personal liberty – the parents' right to reproductive freedom and the cloned child's right to self-determination.     

To know or not to know? Genetic ignorance, autonomy and paternalism

This paper examines some arguments which deny the existence of an individual right to remain ignorant about genetic information relating to oneself--often referred to as 'a right to genetic ignorance' or, more generically, as 'a right not to know'. Such arguments fall broadly into two categories: 1) those which accept that individuals have a right to remain ignorant in self-regarding matters, but deny that this right can be extended to genetic ignorance, since such ignorance may be harmful to others, particularly those to whom one is genetically related (the 'harm to others objection') and 2) those which contend that, even if genetic ignorance is only self harming, it is not something to which individuals can rationally or morally claim to have a 'right' at all, since they defend their claims on autonomy-respecting grounds and ignorance is inimical to autonomy (the 'incoherence objection'). I argue that defenders of a right not to know have some plausible responses to the 'harm to others objection', they and their opponents reach an impasse in which both sides are left voicing concerns about the paternalistic implications of the other's point of view. I conclude that defenders of a right not to know would, therefore, advance their position further by analysing it in terms of values other than those of autonomy and rights.     

Disclosure of Huntington's disease to family members: the dilemma of known but unknowing parties

Predictive genetic testing presents unique issues in the legal and ethical debate concerning disclosure of information within the physician-patient relationship. A duty to disclose information to family members has been found when the disclosure is likely to result in the ability to mitigate the damaging effects of the disease. When evaluating the situation where a individual is at risk of Huntington's disease, the analysis must be different, as shown in this paper, and necessitates an ethical and legal examination of the consequences of receipt of the information on family members, those known but unknowing parties who are at risk of inheriting a genetic disease. This paper analyzes the potential legal duty of a physician to disclose or withhold genetic information from the family members of patients. Existing statutes governing genetic information do not directly address the interests of family members. Courts that have ruled on the duty to disclose medical or genetic information have analyzed these issues using traditional concepts of tort law. Yet the situation presented by Huntington's disease is unique and demands a different framework for analysis, given the late onset and lack of curative or ameliorative treatment. This paper also analyzes the ethical standards to be invoked when considering violating the privacy of a patient or a family member. The principles of autonomy and self-determination of family members are considered, versus the risk of harm and the privacy interest in not knowing potentially devastating information.     

Experiments and rights

William Fletcher's 1905-1906 beriberi experiment with residents of the Kuala Lumpur Lunatic Asylum is the focus of Vollrath's essay on the moral obligations of the scientist. If an experiment harms some subjects (several of Fletcher's patients died), is the scientific integrity of the research consistent with the scientist's moral obligations to those subjects? Do the subjects have the moral right not to be harmed? What are the subjects' moral rights in this context? The author argues that, aside from the issue of using nonconsenting institutionalized subjects, Fletcher's experiment did not violate a moral right of the subjects; moral right is determined prospectively by anticipating risks, not retrospectively by calculating known harms.     

The Tipping of the Big Stone—And Life itself. Obesity,Moral Work and Responsive Selves Over Time

Why is “everything I know is the right thing to do a million miles removed from what I do in reality?” This question posed by Rita, my main interlocutor and friend in a fieldwork that started in 2001–2003 and was taken up again in 2014–2015, opens up an exploration of moral work and moral selves in the context of the obesity epidemic and weight loss processes. I address these questions through the notion of “moral laboratories” taking up Mattingly’s argument that moral cultivation over time cannot be disconnected from a notion of self. Mattingly has consistently argued for a biographical and narrative self, which is processual and created in community. Along these lines, and by recourse to the German philosopher Bernhard Waldenfels’ phenomenology, I will propose the notion of a responsive self. The responsive self highlights the eventness of ongoing experimentation against the odds and captures equally pathic and agentive dimensions of a self that both persists and is transformed over time.     

Beneath the rhetoric: the role of rights in the practice of non-anonymous gamete donation

The use of rights based arguments to justify claims that donor offspring should have access to information identifying their gamete donor has become increasingly widespread. In this paper, I do not intend to revisit the debate about the validity of such rights. Rather, the purpose is to examine the way that such alleged rights have been implemented by those legislatures that have allowed access to identifying information. I will argue that serious inconsistencies exist between the claim that donor offspring have a right to know the identity of their gamete donor and the way such a right is currently met in practice. I hope to show that in systems where non-anonymous donation is practised, an understanding of the proclaimed right of donor offspring to know their genetic identity is one composed of two different rights – the right to know the circumstances of their conception and the right to information identifying the gamete donor – can provide important insights into this important area of public policy.     

Constitution and common law in bioethics

The use of rights based arguments to justify claims that donor offspring should have access to information identifying their gamete donor has become increasingly widespread. In this paper, I do not intend to revisit the debate about the validity of such rights. Rather, the purpose is to examine the way that such alleged rights have been implemented by those legislatures that have allowed access to identifying information. I will argue that serious inconsistencies exist between the claim that donor offspring have a right to know the identity of their gamete donor and the way such a right is currently met in practice. I hope to show that in systems where non-anonymous donation is practised, an understanding of the proclaimed right of donor offspring to know their genetic identity is one composed of two different rights – the right to know the circumstances of their conception and the right to information identifying the gamete donor – can provide important insights into this important area of public policy.     

FURTHERING INJUSTICES AGAINST WOMEN: GENETIC INFORMATION, MORAL OBLIGATIONS, AND GENDER

The purpose of this paper is to show that a decontextualized approach to ethical issues is not just unhelpful for the decision making process of real, situated human beings, but dangerous. This is so, because by neglecting the context in which people make moral decisions we run the risk of reinforcing or furthering injustices against already disadvantaged groups. To show this, I evaluate three moral obligations that our ability to obtain genetic information has made salient: the duty to obtain genetic information about ourselves, the obligation to inform family members about genetic risks and the duty not to reproduce when we know that there is a high risk of transmitting a serious disease or defect. I will argue here that in ignoring the context in which these moral obligations are put into practice, and in particular the situation of women in our society, those who defend these moral duties might be furthering injustices against women.     

Legal aspects of genetic information

The federally funded Human Genome Initiative will lead to the development of new capabilities to learn about an individual''s genetic status. Legal issues are raised concerning patients'' and other parties'' access to that information. This article discusses the effect of existing statutes and case law on three pivotal questions: To what sort of information are people entitled? What control should people have over their genetic information? Do people have a right to refuse genetic information? The article emphasizes that the law protects a patient''s right to obtain or refuse genetic information about oneself, as well as the right to control the dissemination of that information to others.     

Managing ethical challenges around misattributed parentage within the clinical context: Insights from an African moral theory

This study argues the thesis that a set of guidelines ‐ firmly rooted in a particular interpretation of African moral theory, specifically, Ubuntu – will do a better job than current medical ethics frameworks, in addressing ethical challenges around misattributed parentage within the clinical context. Incidental information such as information with significant personal/health implications raises unique challenges for medical professionals. For example, withholding information of misattributed paternity accidentally discovered in clinical interactions may be seen by a patient as a violation of his/her right‐to‐know. Contrarily, disclosure where a patient has not requested information – or where establishing paternity is not the purpose of clinical visit/interaction – may be taken by the patient as a violation of his/her right ‘not‐to‐know’. Resolving these challenges remain a herculean task. African moral theory contains an under‐emphasized value for addressing such ethical challenges around misattributed parentage in the field of transplant. I seek to contribute this knowledge; and enhance clinician‐patient relationship. This study builds off three completed systematic reviews, which aimed to answer the following questions: “what are the ethical challenges regarding information health professionals face within the clinical contest?” and “what core aspects (or common themes) of Ubuntu can be identified in existing literature describing the same?” In this present study, I applied the definition of Ubuntu which captures the core aspects of the theory in ethical literature on the same, to address ethical issues around unsought information of misattributed parentage in the field of transplant.     

Mental competence and long term care: an uncomfortable relationship

Competency is an important concept in medical ethics as well as in law. It refers to the moral principles of self-determination and autonomy, which are of central importance in the ethics of health care. These moral principles also prevail in nursing home care. Societal prejudice concerning nursing home patients suggests that the inhabitants of a nursing home are almost by definition incompetent. We assert that such prejudice rests on certain societal delusions and misinterpretations of incompetency five of which are subsequently analysed. Next we discuss the dominant conception of competency in terms of decisional capacity. This conception is predominantly oriented towards cognitive abilities and underplays affective capacities. We confront this dominant conception with an alternative proposal of competency in terms of 'the capacity to value', which--to our opinion--more properly reflects nursing home practice concerning questions of competency. Finally we address the limitations of any concept of competency or decisional capacity in relation to the moral issues of 'good care' for demented elderly. As an alternative we draw attention to the moral perspective of the 'ethics of care'.     

Hereditary nonpolyposis colorectal cancer family members' perceptions about the duty to inform and health professionals' role in disseminating genetic information

This study's aim was to ascertain hereditary nonpolyposis colorectal cancer (HNPCC) families' views on the duty to inform with particular focus on the role of health professionals in disseminating familial genetic information. Eighty members of 16 families with a clinical or molecular diagnosis of HNPCC completed qualitative interviews regarding views on family members' right to know and who should disseminate familial genetic information. Most indicated that everyone in the family should know about the presence of a mutation in the family, with family members themselves being the preferable informant, supported by health professionals who were seen as helpful in overcoming barriers. All but one respondent indicated that if a parent did not test and presumably did not inform his/her child about the family mutation, the child should be informed by other family members or by a health professional. Many were attuned to confidentiality concerns, but judged them to be outweighed by the importance of family members knowing about the mutation and undertaking proper surveillance. Respondents were more private about the disclosure of individual results to other family members, clearly distinguishing personal results from familial genetic information. These families with a hereditary colon cancer syndrome favor open sharing of genetic information within the family, and desire the supportive involvement of health care professionals in disseminating genetic information.     

The diffusion of new genetic tests for predicting disease.

This paper examines the pathways by which new genetic tests will become available to the public. In view of the scarcity of genetic specialists, the pathway is likely to involve primary care physicians. Other pathways entail state-mandated testing, community-based programs, or testing by laboratories without much involvement of primary care physicians. When testing does become available the "destination" will be either family-centered testing or population-oriented screening. The deterrent to screening will not be the inability to detect disease-causing mutations but the costs and attitudes of providers and the public. When tests are provided primarily to provide information about risks to future children, some people will oppose screening on religious or moral grounds. When there are no inexpensive treatments, some will fear that insurance companies and employers will use tests to deny them health care coverage. Some may not want to know their risks for disorders about which little can be done. For common, multifactorial disorders, genetic tests will have low predictive value. Because of these problems, the decision to be tested, regardless of the destination, requires that "testees" be fully informed and consent to testing. When acceptance rates are low, screening is less likely to be cost-effective; family-centered testing becomes the default destination.     

From Secrets of Life to the Life of Secrets: Tracing Genetic Knowledge as Genealogical Ethics in Biomedical Britain

I argue that the facts of a 'genealogical ethics' are built up over time as local moralities of information disclosure and non-disclosure. In the context of predictive genetic testing technologies, family members must discriminate between genetic information that they think is 'good' to know or make known, and knowledge that they think is 'bad' to tell and share with others. But attempts to deal with the kinship implications of genetic foreknowledge frequently entail unresolved processes of moral decision-making, both within and across the generations. Seen as embodied experiences of moral reckoning, these genealogical knowledge dilemmas also implicate a myriad of interests and divergent claims beyond the life of any one person. This article considers why a specifically anthropological formulation of 'genealogical ethics' challenges the conceptual premiss of individual autonomy underpinning the 'right to know' debates of mainstream Western bioethics.     

Should direct-to-consumer personalized genomic medicine remain unregulated?: a rebuttal of the defenses

Direct-to-consumer personalized genomic medicine has recently grown into a small industry that sells mail-order DNA sample kits and then provides disease risk assessments, typically based upon results from genome-trait association studies. The companies selling these services have been largely exempted from FDA regulation in the United States. Testing kit companies and their supporters have defended the industry's unregulated status using two arguments. First, defenders have argued that mere absence of harm is all that must be proved for mail-order tests to be acceptable. Second, defenders of mail-order testing have argued that there is an individual right to the tests' information. This article rebuts these arguments. The article demonstrates that the direct-to-consumer market has resulted in the sidelining of clinical utility (medical value to patients), leading to the development of certain mail-order tests that do not promote customers' interests and to defenders' downplaying of a potentially damaging empirical study of mail-order genomic testing's effects on consumers. The article also shows that the notion of an individual right to these tests rests on a flawed reading of the key service provided by mail-order companies, which is the provision of medical interpretations, not simply genetic information. Absent these two justifications, there is no reason to exempt direct-to-consumer personalized genomic medicine from stringent federal oversight.