Autonomy is a Right,Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research

Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of ‘autonomy’ as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles – those of autonomy, integrity and authority – to better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other – to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient‐centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable.     

Reproductive justice: Non-interference or non-domination?

The reproductive justice movement started by black women’s rights activists made its way into the academic literature as an intersectional approach to women’s reproductive autonomy. While there are many scholars who now employ the term ‘reproductive justice’ in their research, few have taken up the task of explaining what ‘justice’ entails in reproductive justice. In this paper I take up part of this work and attempt to clarify the relevant kind of freedom an adequate theory of reproductive justice would postulate. To do so, I compare two approaches to reproductive freedom: an approach based on freedom as non-interference and an approach based on freedom as non-domination. I then argue that the non-domination approach better fits the ideals of the reproductive justice movement as set forth by its founders and should be treated as one of the necessary conditions in any non-ideal account of reproductive justice. Towards the end, I single out epistemic non-domination as crucial in shaping the narrative around reproductive justice.     

Autonomy,Natality and Freedom: A Liberal Re‐examination of Habermas in the Enhancement Debate

Jurgen Habermas has argued that carrying out pre‐natal germline enhancements would be inimical to the future child's autonomy. In this article, I suggest that many of the objections that have been made against Habermas' arguments by liberals in the enhancement debate misconstrue his claims. To explain why, I begin by explaining how Habermas' view of personal autonomy confers particular importance to the agent's embodiment and social environment. In view of this, I explain that it is possible to draw two arguments against germline enhancements from Habermas' thought. I call these arguments ‘the argument from negative freedom’ and ‘the argument from natality’. Although I argue that many of the common liberal objections to Habermas are not applicable when his arguments are properly understood, I go on to suggest ways in which supporters of enhancement might appropriately respond to Habermas' arguments.     

Opportunities in Reform: Bioethics and Mental Health Ethics

Last year marks the first year of implementation for both the Patient Protection and Affordable Care Act and the Mental Health Parity and Addiction Equity Act in the United States. As a result, healthcare reform is moving in the direction of integrating care for physical and mental illness, nudging clinicians to consider medical and psychiatric comorbidity as the expectation rather than the exception. Understanding the intersections of physical and mental illness with autonomy and self‐determination in a system realigning its values so fundamentally therefore becomes a top priority for clinicians. Yet Bioethics has missed opportunities to help guide clinicians through one of medicine's most ethically rich and challenging fields. Bioethics' distancing from mental illness is perhaps best explained by two overarching themes: 1) An intrinsic opposition between approaches to personhood rooted in Bioethics' early efforts to protect the competent individual from abuses in the research setting; and 2) Structural forces, such as deinstitutionalization, the Patient Rights Movement, and managed care. These two themes help explain Bioethics' relationship to mental health ethics and may also guide opportunities for rapprochement. The potential role for Bioethics may have the greatest implications for international human rights if bioethicists can re‐energize an understanding of autonomy as not only free from abusive intrusions but also with rights to treatment and other fundamental necessities for restoring freedom of choice and self‐determination. Bioethics thus has a great opportunity amid healthcare reform to strengthen the important role of the virtuous and humanistic care provider.     

Autonomy and Reproductive Rights of Married Ikwerre Women in Rivers State,Nigeria

A woman’s lack of or limited reproductive autonomy could lead to adverse health effects, feeling of being inferior, and above all being unable to adequately care for her children. Little is known about the reproductive autonomy of married Ikwerre women of Rivers State, Nigeria. This study demonstrates how Ikwerre women understand the terms autonomy and reproductive rights and what affects the exercise of these rights. An exploratory research design was employed for this study. A semi-structured interview schedule was used to conduct thirty-four in-depth interviews and six focus group discussions with purposively sampled educated, semi-educated, and uneducated Ikwerre women in monogamous or polygynous marriages. The collected data was analysed qualitatively with MAXQDA 11 using open and axial coding. The interviews and focus group responses reveal a low level of awareness of autonomy and reproductive rights amongst the Ikwerre women in Nigeria. While some educated women were aware of their reproductive rights, cultural practices were reported to limit the exercise of these rights. Participants reported that Ikwerre culture is a patriarchal one where married women are expected to submit and obey their husbands in all matters; and a good married woman according to Ikwerre standard is one who complies with this culture. Women’s refusal of sexual advances from their husbands is described as not being acceptable in this culture; and hence rape in marriage is not recognized in Ikwerre culture. Education and awareness creation on the importance of women’s reproductive autonomy could improve their reproductive rights and autonomy in marital settings. Overcoming the patriarchal aspects of Ikwerre culture—for example, the greater value placed on male children than female children and treating women as incompetent individuals—is necessary to promote gender equality as well as help improve women’s reproductive autonomy.     

How Sex Selection Undermines Reproductive Autonomy

Non-medical sex selection is premised on the notion that the sexes are not interchangeable. Studies of individuals who undergo sex selection for non-medical reasons, or who have a preference for a son or daughter, show that they assume their child will conform to the stereotypical roles and norms associated with their sex. However, the evidence currently available has not succeeded in showing that the gender traits and inclinations sought are caused by a “male brain” or a “female brain”. Therefore, as far as we know, there is no biological reason why parents cannot have the kind of parenting experience they seek with a child of any sex. Yet gender essentialism, a set of unfounded assumptions about the sexes which pervade society and underpin sexism, prevents parents from realising this freedom. In other words, unfounded assumptions about gender constrain not only a child’s autonomy, but also the parent’s. To date, reproductive autonomy in relation to sex selection has predominantly been regarded merely as the freedom to choose the sex of one’s child. This paper points to at least two interpretations of reproductive autonomy and argues that sex selection, by being premised on gender essentialism and/or the social pressure on parents to ensure their children conform to gender norms, undermines reproductive autonomy on both accounts.     

TWO STALEMATES IN THE PHILOSOPHICAL DEBATE ABOUT ABORTION AND WHY THEY CANNOT BE RESOLVED USING ANALOGICAL ARGUMENTS

Philosophical debate about the ethics of abortion has reached stalemate on two key issues. First, the claim that foetuses have moral standing that entitles them to protections for their lives has been neither convincingly established nor refuted. Second, the question of a pregnant woman's obligation to allow the gestating foetus the use of her body has not been resolved. Both issues are deadlocked because philosophers addressing them invariably rely on intuitions and analogies, and such arguments have weaknesses that make them unfit for resolving the abortion issue. Analogical arguments work by building a kind of consensus, and such a consensus is virtually unimaginable because (1) intuitions are revisable, and in the abortion debate there is great motive to revise them, (2) one's position on abortion influences judgments about other issues, making it difficult to leverage intuitions about other ethical questions into changing peoples' minds about abortion, and (3) the extent of shared values in the abortion debate is overstated. Arguments by analogy rely on an assumption of the commensurability of moral worldviews. But the abortion debate is currently unfolding in a context of genuinely incommensurable moral worldviews. The article ends by arguing that the default position must be to permit abortion as a consequence of the freedom of conscience protected in liberal societies.     

Freedom of Conscience in Health Care: Distinctions and Limits

The widespread emergence of innumerable technologies within health care has complicated the choices facing caregivers and their patients. The escalation of knowledge and technical innovation has been accompanied by an erosion of moral and ethical consensus among health providers that is reflected in the abandonment of the Hippocratic Oath as the immutable bedrock of medical ethics. Ethical conflicts arise when the values of health professionals collide with the expressed wishes of patients or the dictates of regulatory bodies and administrators. Increasing attempts by groups outside of the medical profession to limit freedom of conscience for health providers has raised concern and consternation among some health professionals. The personal and professional impact of health professionals surrendering freedom of conscience and participating in actions they deem malevolent or unethical has not been adequately studied and may not be inconsequential when considering the recognized impact of other circumstances of coerced complicity. We argue that the distinction between the two ways that freedom of conscience is exercised (avoiding a perceived evil and seeking a perceived good) provides a rational basis for a principled limitation of this fundamental freedom.     

Can conscientious objection lead to eugenic practices against LGBT individuals?

In a recent article in this journal, Abram Brummett argues that new and future assisted reproductive technologies will provide challenging ethical questions relating to lesbian, gay, bisexual and transgender (LGBT) persons. Brummett notes that it is likely that some clinicians may wish to conscientiously object to offering assisted reproductive technologies to LGBT couples on moral or religious grounds, and argues that such appeals to conscience should be constrained. We argue that Brummett's case is unsuccessful because he: does not adequately interact with his opponents’ views; equivocates on the meaning of ‘natural’; fails to show that the practice he opposes is eugenic in any non‐trivial sense; and fails to justify and explicate the relevance of the naturalism he proposes. We do not argue that conscience protections should exist for those objecting to providing LGBT people with artificial reproductive technologies, but only show that Brummett's arguments are insufficient to prove that they should not.     

Changing our perspective: Is there a government obligation to promote autonomy through the provision of public prenatal screening?

In many countries, prenatal testing for certain fetal abnormalities is offered via publicly funded screening programs. The concept of reproductive autonomy is regarded as providing a justificatory basis for many such programs. The purpose of this study is to re‐examine the normative basis of public prenatal screening for fetal abnormalities by changing our perspective from that of autonomy to obligation. After clarifying the understanding of autonomy adopted in the justification for public prenatal screening programs, we identify two problems concerning this justification: first, the extent to which the government is obliged to meet this demand is not evident; and, second, it is not clear whether the provision of public screening is the most appropriate way to promote autonomy. Next, to tackle these problems, we focus on Onora O’Neill’s argument of rights and obligations. Drawing on this argument, we show that, in addressing the problems above, it is important to change our normative perspective from rights or autonomy to obligation. Our argument will show that since the government does not have an incontrovertibly fundamental obligation to promote autonomy, this obligation needs to be constrained in terms of compatibility with other fundamental obligations. In addition, even if a government is obliged to promote autonomy to some degree, there could be more appropriate means to achieve it than providing public prenatal screening; therefore, it is not necessary for government obligations to extend to the provision of public prenatal screening.     

The child's best interest in gamete donation

Procreation with donor gametes is widespread and commonly accepted, but it involves ethical questions about the child's best interest. Understanding the historical structures of the moral discussion of gamete donation may contribute to reflecting on the child's best interest. This is why I have analysed the debate on gamete donation in the Netherlands, and this analysis has uncovered some striking discontinuities. Notions of the child's best interest have undergone a radical swing. In the past, it was considered acceptable to conceal the truth about the child's biological origin, but in the past two decades the general opinion has changed to the common belief that this information should be shared with the child. This changed notion of the child's best interest will be analysed using a framework encompassing three views of the child, which derive from the debate on children's rights. These three views each provide a different interpretation of the child's moral and political status. I conclude that the changed notion of the child's best interest results from a view of the child that focuses on autonomy and citizenship, and which frames the child's interests according to its legal status. I comment on this view and I champion an alternative one, namely ‘the embedded child’. This is a relational view based on care ethics that goes beyond what can be articulated in law, and that will help to establish a more balanced interpretation of the child's best interest at the practice and policy levels of gamete donation.     

Conscientious Refusals and Reason‐Giving

Some philosophers have argued for what I call the reason‐giving requirement for conscientious refusal in reproductive healthcare. According to this requirement, healthcare practitioners who conscientiously object to administering standard forms of treatment must have arguments to back up their conscience, arguments that are purely public in character. I argue that such a requirement, though attractive in some ways, faces an overlooked epistemic problem: it is either too easy or too difficult to satisfy in standard cases. I close by briefly considering whether a version of the reason‐giving requirement can be salvaged despite this important difficulty.     

Dignity,conscience and religious pluralism in healthcare: An argument for a presumption in favour of respect for religious belief

Religious pluralism in healthcare means that conflicts regarding appropriate treatment can occur because of convictions of patients and healthcare workers alike. This contribution argues for a presumption in favour of respect for religious belief on the basis that such convictions are judgements of conscience, and respect for conscience is core to what it means to respect human dignity. The human person is a subject in relation to all that is. Human dignity refers to the worth of human persons as members of the species with capacities of reason and free choice that enable the realisation of dignity as self-worth through morally good behaviour. Conscience is both a feature of inherent dignity and necessary for acquiring dignity as self-worth. Conscience enables a person to identify objective values and disvalues for human flourishing, the rational capacity to reason about the relative importance of these values and the right way to achieve them and the judgement of the good end and the right means. Human persons are bound to follow their conscience because this is their subjective relationship to objective truth. Religious convictions are decisions of conscience because they are subjective judgements about objective truth. The presumption of respect for religious belief is limited by the normative dimension of human dignity such that a person's beliefs may be overridden if they objectively violate inherent dignity or morally legitimate acquired dignity.     

Prenatal testing: Does reproductive autonomy succeed in dispelling eugenic concerns?

Traditionally, two main rationales for the provision of prenatal testing and screening are identified: the expansion of women’s reproductive choices and the reduction of the burden of disease on society. With the number of prenatal tests available and the increasing potential for their widespread use, it is necessary to examine whether the reproductive autonomy model remains useful in upholding the autonomy of pregnant women or whether it allows public health considerations and even eugenic aims to be smuggled in under the smokescreen of autonomy. In this article I argue that if we are serious about upholding women’s autonomy in the context of prenatal testing, what is needed is a model based on a more robust conception of reproductive autonomy, such as the one defended by Josephine Johnston and Rachel Zacharias as ‘reproductive autonomy worth having’. While Johnston and Zacharias put forward a basic outline of this conception, I apply it to the specific case of prenatal testing and show how it responds to objections levelled against the reproductive autonomy model. I argue that adopting this kind of conception is necessary to avoid fundamental challenges to women’s autonomy when it comes to prenatal screening and testing.     

Social Responsibility and the State's Duty to provide Healthcare: An Islamic Ethico‐Legal Perspective

The United Nations Educational, Scientific and Cultural Organization's (UNESCO) Declaration on Bioethics and Human Rights asserts that governments are morally obliged to promote health and to provide access to quality healthcare, essential medicines and adequate nutrition and water to all members of society. According to UNESCO, this obligation is grounded in a moral commitment to promoting fundamental human rights and emerges from the principle of social responsibility. Yet in an era of ethical pluralism and contentions over the universality of human rights conventions, the extent to which the UNESCO Declaration can motivate behaviors and policies rests, at least in part, upon accepting the moral arguments it makes. In this essay I reflect on a state's moral obligation to provide healthcare from the perspective of Islamic moral theology and law. I examine how Islamic ethico‐legal conceptual analogues for human rights and communal responsibility, ?uqūq al‐’ibād and far? al‐kifāyah and other related constructs might be used to advance a moral argument for healthcare provision by the state. Moving from theory to application, I next illustrate how notions of human rights and social responsibility were used by Muslim stakeholders to buttress moral arguments to support American healthcare reform. In this way, the paper advance discourses on a universal bioethics and common morality by bringing into view the concordances and discordances between Islamic ethico‐legal constructs and moral arguments advanced by transnational health policy advocates. It also provides insight into applied Islamic bioethics by demonstrating how Islamic ethico‐legal values might inform the discursive outputs of Muslim organizations.     

TOWARD A GENDER-SENSITIVE ASSISTED REPRODUCTION POLICY

The recent case of the UK woman who lost her legal struggle to be impregnated with her own frozen embryos, raises critical issues about the meaning of reproductive autonomy and the scope of regulatory practices. I revisit this case within the context of contemporary debate about the moral and legal dimensions of assisted reproduction. I argue that the gender neutral context that frames discussion of regulatory practices is unjust unless it gives appropriate consideration to the different positions women and men occupy in relation to reproductive processes and their options for autonomous choice. First, I consider relevant legal rulings, media debate, and scholarly commentary. Then I discuss the concept of reproductive autonomy imbedded in this debate. I argue that this concept conflates informed consent and reproductive autonomy, thereby providing an excessively narrow reading of autonomy that fails to give due regard to relations among individuals or the social, political and economic environment that shapes their options. I contrast this notion of autonomy with feminist formulations that seek to preserve respect for the agency of individuals without severing them from the conditions of their embodiment, their surrounding social relationships, or the political contexts that shape their options. Taking these considerations into account I weigh the advantages of regulation over the commercial market arrangement that prevails in some countries and suggest general guidelines for a regulatory policy that would more equitably resolve conflicting claims to reproductive autonomy.     

ADVANCE DIRECTIVES IN TURKEY'S CULTURAL CONTEXT: EXAMINING THE POTENTIAL BENEFITS FOR THE IMPLEMENTATION OF PATIENT RIGHTS

Advance directives are not a part of the healthcare service in Turkey. This may be related with the fact that paternalism is common among the healthcare professionals in the country, and patients are not yet integrated in the decision‐making process adequately. However, starting from the enactment of the Regulation of Patient Rights in 1998, this situation started to change. While the paternalist tradition still appears to be strong in Turkey, the Ministry of Health has been taking concrete measures in the recent years to ensure that patient rights are implemented in healthcare practice. Therefore, Turkey now seems to be in a transitional period where a move towards a more patient‐autonomy centred approach is being supported by the regulatory authorities, as well as the academic circles and the public at large. In the light of this background, this paper aims to examine the potential benefits of advance directives, particularly with regard to their possible effect in the clinical decision‐making process of Turkey's context. It will be argued that advance directives, if correctly understood and implemented in the right settings, may be beneficial, particularly for improving communication between patients and healthcare professionals and for implementing of the right to refuse treatment.     

The "amazing" fertility decline: Islam, economics, and reproductive decision making among working-class Moroccan women

Often it is understood that Islam prohibits family planning because the Qur'an does not explicitly address contraception. Public health and development officials have recently congratulated the Muslim world for decreases in fertility given the supposed constraints placed on reproductive healthcare by Islam, while popular culture writers have warned the West of threats by young Muslims if the population goes uncontrolled. This article draws on data collected through interviews with working-class women seeking reproductive healthcare at clinics in Rabat, Morocco, and with medical providers to challenge the link between Islamic ideology and reproductive practices and the correlation among Islam, poverty, and fertility. Morocco, a predominantly Muslim country, has experienced a dramatic decrease in fertility between the 1970s and today. I argue that patients and providers give new meanings to modern reproductive practices and produce new discourses of reproduction and motherhood that converge popular understandings of Islam with economic conditions of the Moroccan working class.     

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.