DEFENDING THE DUTY TO RESEARCH?

In 2005, John Harris published a paper in the Journal of Medical Ethics in which he claimed that there was a duty to support scientific research. With Sarah Chan, he defended his claims against criticisms in this journal in 2008. In this paper I examine the defence, and claim that it is not powerful. Although he has established a slightly stronger position, it is not clear that the defence is sufficiently strong to show that there is a duty to support scientific research. Important questions about fairness, about rescue, and about the relationship between reasons and obligations to act can still be raised; and these questions are important enough to destabilize the defence.     

GENETIC ENGINEERING TO AVOID GENETIC NEGLECT: FROM CHANCE TO RESPONSIBILITY

Currently our assessment of whether someone is a good parent depends on the environmental inputs (or lack of such inputs) they give their children. But new genetic intervention technologies, to which we may soon have access, mean that how good a parent is will depend also on the genetic inputs they give their children. Each new piece of available technology threatens to open up another way that we can neglect our children. Our obligations to our children and our susceptibilities to corresponding legal and moral sanctions may be about to explosively increase. In this paper I argue that we should treat conventional neglect and ‘genetic neglect’– failing to use genetic intervention technologies to prevent serious diseases and disabilities – morally consistently. I conclude that in a range of cases parents will have a moral obligation to use genetic treatments to prevent serious disabilities in their children. My particular focus is on prenatal interventions and their impact of the bodily integrity of expectant mothers. I conclude that although bodily integrity constrains moral obligations, it is outweighed in a range of cases.     

ORPHANS BY DESIGN: THE FUTURE OF GENETIC PARENTHOOD

Establishing the nature of genetic parenthood is an important task. This is, firstly, because many people desire that relationship and it is in their interest to know what that is, and secondly, because there is a view that it may incur certain moral obligations between the genetic parent and their child. Many theorists have made attempts to define exactly what genetic parenthood is. I show that these definitions are deficient if they wish to fully capture all reproductive scenarios in ways that are intuitive and/or meaningful. Through a series of cases involving technologies such as cloning and genome editing, we see that in lieu of the traditional two parents, there are possible beings who have no genetic parents, one genetic parent, or many genetic parents. Establishing these cases complicates our understanding of genetic parenthood. From this, we must reconsider current definitions, as well as the usefulness of defining genetic parenthood in these complex cases. Here I do not aim to establish a new definition, but rather to suggest that this complexity makes it necessary to re‐assess the importance of the connection between genetic parenthood and parental obligations and authorities.     

Free riders and pious sons--why science research remains obligatory

John Harris has previously proposed that there is a moral duty to participate in scientific research. This concept has recently been challenged by Iain Brassington, who asserts that the principles cited by Harris in support of the duty to research fail to establish its existence. In this paper we address these criticisms and provide new arguments for the existence of a moral obligation to research participation. This obligation, we argue, arises from two separate but related principles. The principle of fairness obliges us to support the social institutions which sustain us, of which research is one; while the principle of beneficence, or the duty of rescue, imposes upon us a duty to prevent harm to others, including by supporting potentially beneficial, even life-saving research. We argue that both these lines of argument support the duty to research, and explore further aspects of this duty, such as to whom it is owed and how it might be discharged.     

A common heritable factor influences prosocial obligations across multiple domains

Although it has been shown that prosocial behaviour is heritable, it has not yet been established whether narrower aspects of prosociality are heritable, nor whether a common mechanism influences prosociality across its multiple domains. Here, we examine civic duty, work-place commitment and concern for the welfare of others with a study of prosocial obligations in 958 adult twin-pairs. Multivariate modelling indicated the existence of genetic factors underlying general prosocial obligations in females, with familial effects (genetic and shared-environment effects were indistinguishable) influencing this general mechanism in males. At the domain-specific level, modest genetic effects were observed in females for civic and work obligations, with shared-environment effects influencing welfare obligations. In males, genetic influences were observed for welfare obligation, with unique environments affecting work and civic duty.     

The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information

Genetic testing reveals information about a patient's health status and predictions about the patient's future wellness, while also potentially disclosing health information relevant to other family members. With the increasing availability and affordability of genetic testing and the integration of genetics into mainstream medicine, the importance of clarifying the scope of confidentiality and the rules regarding disclosure of genetic findings to genetic relatives is prime. The United Nations International Declaration on Human Genetic Data urges an appreciation for principles of equality, justice, solidarity and responsibility in the context of genetic testing, including a commitment to honoring the privacy and security of the person tested. Considering this global mandate and recent professional statements in the context of a legal amendment to patient privacy policies in Australia, a fresh scrutiny of the legal history of a physician's duty to warn is warranted. This article inquiries whether there may be anything ethically or socially amiss with a potential future recommendation for health professionals or patients to universally disclose particular cancer predisposition genetic diagnosis to genetic family members. While much of the discussion remains applicable to all genetic diagnosis, the article focuses on the practice of disclosure within the context of BRCA1/2 diagnosis. An ‘ethic of care’ interpretation of legal tradition and current practice will serve to reconcile law and medical policy on the issue of physician disclosure of genetic results to family members without patient consent.     

RETRACING LIBERALISM AND REMAKING NATURE: DESIGNER CHILDREN,RESEARCH EMBRYOS,AND FEATHERLESS CHICKENS

Liberal theory seeks to achieve toleration, civil peace, and mutual respect in pluralistic societies by making public policy without reference to arguments arising from within formative ideals about what gives value to human life. Does it make sense to set aside such conceptions of the good when it comes to controversies about stem cell research and the genetic engineering of people or animals? Whether it is reasonable to bracket our worldviews in such cases depends on how we answer the moral questions that the use of these biotechnologies presuppose. I argue that the moral language of liberal justice – of rights and duties, interests and opportunities, freedom and consent, equality and fairness – cannot speak to these underlying concerns about what the human embryo is, why the natural lottery matters to us, and whether ‘animal nature’ is worth preserving. I conclude that liberal theory is incapable of furnishing a coherent or desirable account to govern the way we use our emerging powers of biotechnology.     

GENETIC TIES: ARE THEY MORALLY BINDING?

Does genetic relatedness define who is a mother or father and who incurs obligations towards or entitlements over children? While once the answer to this question may have been obvious, advances in reproductive technologies have complicated our understanding of what makes a parent. In a recent publication Bayne and Kolers argue for a pluralistic account of parenthood on the basis that genetic derivation, gestation, extended custody and sometimes intention to parent are sufficient (but not necessary) grounds for parenthood. ¹ 1 Bayne, T. & Kolers, A. . Toward A Pluralist Account of Parenthood . Bioethics 2003 ; 17 : 221 – 242 .
Bayne and Kolers further suggest that definitions of parenthood are underpinned by the assumption that ‘being causally implicated in the creation of a child is the key basis for being its parent’. ² 2 Ibid. p. 241.
This paper examines the claim that genetic relatedness is sufficient grounds for parenthood based on a causal connection between genetic parents and their offspring. I argue that parental obligations are about moral responsibility and not causal responsibility because we are not morally accountable for every consequence to which we causally contribute. My account includes the conditions generally held to apply to moral responsibility, i.e. freedom and foreseeability. I argue that parental responsibilities are generated whenever the birth of a child is a reasonably foreseeable consequence of voluntary actions. I consider the implications of this account for third parties involved in reproductive technologies. I argue that under some conditions the obligations generated by freely and foreseeably causing a child to exist can be justifiably transferred to others.     

Altruistic surrogacy and informed consent

A crucial premise in many recent arguments against the moral permissibility of surrogate motherhood arrangements is the claim that a woman cannot autonomously consent to gestating and relinquishing a child to another couple, because she cannot be fully informed about what her future emotional responses will be to the foetus developing within her, and to the giving up of the newborn infant to its social parents. When conjoined with some moral principle about the justifiable limits on the ways others can be expected to exercise their autonomy on our behalf, this claim is often taken to establish that various forms of surrogate motherhood arrangements are morally wrong. In this paper I want to show that there is a serious non sequitur in this kind of argument. That is, I want to show that even if women cannot in fact have this kind of information about what their future emotional responses to pregnancy and relinquishment will be, nothing follows about the wrongness or otherwise of surrogacy. For, when we consider what counts as informed consent in the context of other important ventures with uncertain consequences, it becomes clear that informed consent does not require having this kind of information about one's future emotional states. In putting these arguments, I also hope to clarify some of the connections which might be thought to hold between informed consent and autonomous decision-making generally.     

Rights, indirect harms and the non-identity problem

The non‐identity problem is the problem of grounding moral wrongdoing in cases in which an action affects who will exist in the future. Consider a woman who intentionally conceives while on medication that is harmful for a fetus. If the resulting child is disabled as a result of the medication, what makes the woman's action morally wrong? I argue that an explanation in terms of harmful rights violations fails, and I focus on Peter Markie's recent rights‐based defense. Markie's analysis rests on the notion of an indirect harm, and I show that the calculation of an indirect harm relies on an improper baseline for the determination of whether or not an action adversely affects a patient's interests. I also defend an impersonal duty‐based analysis of the wrongdoing in non‐identity cases against an objection by Markie. I close by arguing that the rights‐based analysis is insensitive to context and that context is morally relevant in the determination of the moral valence of actions in cases of non‐identity. This failure provides a pro tanto reason to favor an impersonal duty‐based analysis of the wrongdoing in non‐identity cases.     

John Harris' argument for a duty to research

John Harris suggests that partcipation in or support research, particularly medical research, is a moral duty. One kind of defence of this position rests on an appeal to the past, and produces two arguments. The first of these arguments is that it is unfair to accept the benefits of research without contributing something back in the form of support for, or participation in, research. A second argument is that we have a social duty to maintain those practices and institutions that sustain us, such as those which contribute to medical knowledge. This argument is related to the first, but it does not rely so heavily on fairness. Another kind of defence of the duty to research rests on an appeal to the future benefits of research: research is an effective way to discharge a duty to rescue others from serious illness or death, therefore we have a duty to research. I suggest that all three of Harris' lines fail to provide a compelling duty to research and spell out why. Moreover, not only do the lines of argument fail in their own terms: in combination, they turn out to be antagonistic to the very position that Harris wants to defend. While it is not my intention here to deny that there might be a duty to research, I claim that Harris' argument for the existence of such a duty is not the best way to establish it.     

Aquatic animals, cognitive ethology, and ethics: questions about sentience and other troubling issues that lurk in turbid water

In this general, strongly pro-animal, and somewhat utopian and personal essay, I argue that we owe aquatic animals respect and moral consideration just as we owe respect and moral consideration to all other animal beings, regardless of the taxonomic group to which they belong. In many ways it is more difficult to convince some people of our ethical obligations to numerous aquatic animals because we do not identify or empathize with them as we do with animals with whom we are more familiar or to whom we are more closely related, including those species (usually terrestrial) to whom we refer as charismatic megafauna. Many of my examples come from animals that are more well studied but they can be used as models for aquatic animals. I follow Darwinian notions of evolutionary continuity to argue that if we feel pain, then so too do many other animals, including those that live in aquatic environs. Recent scientific data ('science sense') show clearly that many aquatic organisms, much to some people's surprise, likely suffer at our hands and feel their own sorts of pain. Throughout I discuss how cognitive ethology (the study of animal minds) is the unifying science for understanding the subjective, emotional, empathic, and moral lives of animals because it is essential to know what animals do, think, and feel as they go about their daily routines. Lastly, I argue that when we are uncertain if we are inflicting pain due to our incessant, annoying, and frequently unnecessary intrusions into the lives of other animals as we go about 'redecorating nature' (removing animals or moving them from place to place), we should err on the side of the animals and stop engaging in activities that cause pain and suffering.     

Obligatory precautions against infection

If we have a duty not to infect others, how far does it go? This question is often discussed with respect to HIV transmission, but reflection on other diseases like influenza raises a number of interesting theoretical issues. I argue that a duty to avoid infection not only yields requirements for persons who know they carry a disease, but also for persons who know they are at increased risk, and even for those who definitely know they are completely healthy. Given the numerous ways in which human interaction facilitates the spread of communicable diseases, a maximum level of precaution would be very demanding – possibly unreasonably demanding. The ‘over‐demandingness problem’ is mostly invoked as a criticism of utilitarianism, as this theory requires moral agents to always maximise general welfare, even at significant cost for themselves. However, I argue that, with respect to precautions against infectious diseases like influenza, utilitarianism is able to avoid the over‐demandingness problem. A contractualist account, on the other hand, whilst able to explain how one's obligations to avoid infection can be limited, given that other persons have opportunities and responsibilities to protect themselves, in the end requires precautions that raise the over‐demandingness problem.     

Experiences of Genetic Risk: Disclosure and the Gendering of Responsibility

The question of ‘who owns genetic information‘ is increasingly a focus of ethical inquiry. Applied to predictive testing, several recent critiques suggest that persons with a genetic disorder have a moral duty to disclose that information to other family members. The justification for this obligation is that genetic information belongs to and may benefit not only a single individual, but also members of a biological kinship. This paper considers this issue from a different vantage point: How does gender intersect with the moral duty to disclose genetic information? Scholars have argued that gender is partly comprised of distinct assignments and assumptions of responsibility. Thus, there is a danger that gendered patterns of socialization will make women feel that they should take primary responsibility for disclosing genetic information to others. This article explores issues of responsibility and disclosure of risk information by drawing on an empirical study of women and men who have undergone genetic testing for hereditary breast/ovarian cancer. The research study suggests that disclosure of genetic information is a gendered activity, with both the benefits and burdens of this task falling primarily on women. It also illustrates that when disclosure is understood contextually, it is a far more complicated matter than when viewed through a theoretical lens. The article considers the relevance of these findings on ethical debate and genetic counselling practices.     

Reassessing insurers' access to genetic information: genetic privacy, ignorance, and injustice

Many countries have imposed strict regulations on the genetic information to which insurers have access. Commentators have warned against the emerging body of legislation for different reasons. This paper demonstrates that, when confronted with the argument that genetic information should be available to insurers for health insurance underwriting purposes, one should avoid appeals to rights of genetic privacy and genetic ignorance. The principle of equality of opportunity may nevertheless warrant restrictions. A choice-based account of this principle implies that it is unfair to hold people responsible for the consequences of the genetic lottery, since we have no choice in selecting our genotype or the expression of it. However appealing, this view does not take us all the way to an adequate justification of inaccessibility of genetic information. A contractarian account, suggesting that health is a condition of opportunity and that healthcare is an essential good, seems more promising. I conclude that if or when predictive medical tests (such as genetic tests) are developed with significant actuarial value, individuals have less reason to accept as fair institutions that limit access to healthcare on the grounds of risk status. Given the assumption that a division of risk pools in accordance with a rough estimate of people's level of (genetic) risk will occur, fairness and justice favour universal health insurance based on solidarity.     

THE DUTY TO DIE AND THE BURDENSOMENESS OF LIVING

This article addresses the question of whether the arguments for a duty to die given by John Hardwig, the most prominent philosophical advocate of such a duty, are sound. Hardwig believes that the duty to die is relatively widespread among those with burdensome illnesses, dependencies, or medical conditions. I argue that although there are rare circumstances in which individuals have a duty to die, the situations Hardwig describes are not among these. After reconstructing Hardwig's argument for such a duty, highlighting his central premise that ill, dependent, or aged individuals can impose unfair burdens upon others by continuing to live, I clarify precisely what Hardwig intends by his thesis that many of us have a duty to die. I then show that an important disanalogy exists between an uncontroversial example in which an individual has a duty to die and the situations in which Hardwig proposes individuals have a duty to die. More specifically, in situations where a duty to die exists, an individual's having a duty to die logically implies that those she burdens have a right to kill that individual in self‐defense. I then suggest that the burdens that ill, dependent, or aged individuals impose on their families, loved ones, or caregivers do not constitute the kind of threat that warrants the latter killing the former in self‐defense. Hence, the duty to die is much rarer than Hardwig supposes.     

PRENATAL GENETIC TESTING KITS SOLD AT YOUR LOCAL PHARMACY: PROMOTING AUTONOMY OR PROMOTING CONFUSION?

Research groups around the world are developing non‐invasive methods of prenatal genetic diagnosis, in which foetal cells are obtained by maternal blood test. Meanwhile, an increasing number of genetic tests are sold directly to the public. I extrapolate from these developments to consider a scenario in which PNGD self‐testing kits are sold directly to the public. Given the opposition to over‐the‐counter genetic tests and the continuing controversy surrounding PNGD, it is reasonable to expect objections to PNGD self‐testing kits. I focus on one potential objection, that PNGD self‐testing kits would undermine the autonomy of potential test subjects. More specifically, that ‘direct to the public’ PNGD would fail to ensure that consumers exercise autonomy in the following PNGD‐related choices:

• ? Should I use PNGD?
• ? Based on the results of the PNGD test, should I continue or terminate my pregnancy?

Under the current system, PNGD is provided by health care practitioners, who are required to counsel women both before and after the test. In contrast, ‘direct to the public’ PNGD would allow women to make their PNGD‐related decisions outside the context of the health care system. I compare these two decision‐making contexts, arguing that the health care system is not unequivocally better at promoting the autonomy of potential test subjects. Therefore the promotion of autonomy does not constitute a strong argument against such test kits. Other objections may be more persuasive, so I do not offer an overall assessment of the acceptability of ‘direct to the public’ PNGD.     

Taking due care: moral obligations in dual use research

In the past decade, the perception of a bioterrorist threat has increased and created a demand on life scientists to consider the potential security implications of dual use research. This article examines a selection of proposed moral obligations for life scientists that have emerged to meet these concerns and the extent to which they can be considered reasonable. It also describes the underlying reasons for the concerns, how they are managed, and their implications for scientific values. Five criteria for what constitutes preventable harm are suggested and a number of proposed obligations for life scientists are considered against these criteria, namely, the obligations to prevent bioterrorism; to engage in response activities; to consider negative implications of research; not to publish or share sensitive information; to oversee and limit access to dangerous material; and to report activities of concern. Although bioterrorism might be perceived as an imminent threat, the analysis illustrates that this is beyond the responsibility of life scientists either to prevent or to respond to. Among the more reasonable obligations are duties to consider potential negative implications of one's research, protect access to sensitive material, technology and knowledge, and report activities of concern. Responsibility, therefore, includes obligations concerned with preventing foreseeable and highly probable harm. A central conclusion is that several of the proposed obligations are reasonable, although not unconditionally.     

In defense of dignity: Reflections on the moral function of human dignity

This paper defends human dignity in two ways. First, by confronting the criticism that human dignity does not serve an important function in contemporary moral discourse and that its function can be sufficiently performed by other moral terms. It is argued that this criticism invites a danger of moral reductionism, which impoverishes moral discourse. The authority of moral philosophy to correct widely shared moral intuitions, rooted in experiences of grave injustices and wrongs, is questioned. Secondly, dignity is defended by showing what is needed to uphold it, both in theory and practice. It is argued, and demonstrated through examples, that human dignity as a universal value ascribed to human beings and the virtue of dignified action are intimately related. This is fleshed out in terms of Kant’s analysis of respect in the practical sense and of virtue as a commitment to the value of dignity as a constitutive end of our moral order. It is furthermore argued that theoretical attempts to ground respect for dignity in human capacities lead to a moral impasse. It is necessary to act as if every human being is worthy of respect. This practical approach requires institutions and specified moral obligations that are integral to the democratic ethos and the rule of law, which guarantees the equal status of human beings. This practical task requires that we consistently tease out and act on the implications of these principles rather than seek deeper justification for the equal worth of humans, articulated in the term human dignity.     

Dimensions of responsibility in medical genetics: exploring the complexity of the “duty to recontact”

Discussion of a “duty to recontact” emerged as technological advances left professionals considering getting back in touch with patients they had seen in the past. While there has been much discussion of the duty to recontact as a matter of theory and ethics, there has been rather little empirically based analysis of what this “duty” consists of. Drawing on interviews with 34 professionals working in, or closely with, genetics services, this paper explores what the “duty to recontact” means for healthcare professionals involved in genetics. Using a discourse analytic framework, the paper identifies three system generated discourses on recontact (governance, legal and responsibilizing discourses) and three lifeworld discourses (situating recontact as a formal duty; more loosely as an obligation; and as a personal sense of responsibility). In summary, the paper shows that the “duty” to recontact involves a complex interplay of system responsibilities with professional duties, responsibilities and obligations.