Because of the important benefits that biomedical research offers to humans, some have argued that people have a general moral obligation to participate in research. Although the defense of such a putative moral duty has raised controversy, few scholars, on either side of the debate, have attended to the social context in which research takes place and where such an obligation will be discharged. By reflecting on the social context in which a presumed duty to participate in research will obtain, (...) this article shows that decontextualized discussions of this putative moral obligation are problematic. (shrink)
Abstract BACKGROUND: Anonymity remains the more common practice in gamete donations, but legislation prohibiting anonymity with a goal of protecting donor-conceived children's right to know their genetic origins is becoming more common. However, given the dearth of research investigating the function of anonymity for donors and recipients, it is unclear whether these policies will accomplish their goals. The aim of this study was to explore experiences with anonymity among oocyte donors and recipients who participated in an anonymous donor oocyte program (...) and to understand the ways in which anonymity functions for them. -/- METHODS: Semistructured interviews were conducted with 50 women: 28 oocyte donors and 22 recipients who were recruited from an academic center for reproductive medicine in the United States. -/- RESULTS: Donors and recipients view anonymity both as a mechanism to protect the interests of all parties (recipients, donors, and donor-conceived children) and as a point of conflict. Specifically, three key areas were identified where both donors and recipients saw anonymity as having an important role: relieving anxieties about family structures and obligations; protecting their interests and those of donor-conceived children (while acknowledging where interests conflict); and managing the future. -/- CONCLUSION: As gamete donation increasingly moves away from the practice of anonymity, examining why anonymity matters to stakeholders will be helpful in devising strategies to successfully implement identity-release options. (shrink)
It is a thrill to have two scholars whom I admire greatly commenting on my own work. I want to thank Professors Miriam Solomon and Inmaculada de Melo-Martin for their careful reading and attention to the book. I found their positive evaluation of the research very encouraging and still both commentaries offer critical challenges that warrant attention. This response will address two points of discussion: normative theorizing on trust; whether the conceptual resources, specifically the crisis of trust framework, (...) can address the present situation of COVID vaccine hesitancy.Solomon and de Melo-Martin question the limited attention I give to evaluating the propositional claims and the... (shrink)
The therapeutic misconception has been seen as presenting an ethical problem because failure to distinguish the aims of research participation from those receiving ordinary treatment may seriously undermine the informed consent of research subjects. Hence, most theoretical and empirical work on the problems of the therapeutic misconception has been directed to evaluate whether, and to what degree, this confusion invalidates the consent of subjects. We argue here that this focus on the understanding component of informed consent, while important, might be (...) too narrow to capture the ethical complexity of the therapeutic misconception. We show that concerns about misplaced trust and exploitation of such trust are also relevant, and ought to be taken into account, when considering why the therapeutic misconception matters ethically. (shrink)
Bioethicists, like many other academics, have a tendency to try to make things general and simpler by eliminating context. Particulars, such as race, economic class, and gender, often seem to be lost in this ocean of generality and abstraction. But in losing them, we are neglecting the analysis of serious moral problems and, with it, the possibility of offering some kind of solution to such problems. This article argues that particulars do matter very much. We will focus ourattention here on (...) gender. We will argue that ignoring questions of gender when evaluating genetic technologies is seriously problematic because it might lead to further injustices against women. Proceeding with a noncontextual understanding of genetic technologies will likely disregard the unjust ways in which the health care system treats women, as well as the ways in which genetic technologies impose extra burdens on them. (shrink)
It is argued here that bioethicists might inadvertently be promoting genetic determinism: the idea that genes alone determine human traits and behaviours. Discussions about genetic testing are used to exemplify how they might be doing so. Quite often bioethicists use clinical cases to support particular moral obligations or rights as if these cases were representative of the kind of information we can acquire about human diseases through genetic testing, when they are not. On other occasions, the clinical cases are presented (...) in simplistic ways that portray genetic testing as yielding information more accurate than it actually is. It is concluded that, because of the problematic implications that the ideology of genetic determinism might have for individuals’ wellbeing and for our public policies, bioethicists should be careful to present these issues in ways that do not promote questionable ideas about the causal role of genes in human diseases and behaviours. (shrink)
The lack of public support for climate change policies and refusals to vaccinate children are just two alarming illustrations of the impacts of dissent about scientific claims. Dissent can lead to confusion, false beliefs, and widespread public doubt about highly justified scientific evidence. Even more dangerously, it has begun to corrode the very authority of scientific consensus and knowledge. Deployed aggressively and to political ends, some dissent can intimidate scientists, stymie research, and lead both the public and policymakers to oppose (...) important public policies firmly rooted in science. -/- To criticize dissent is, however, a fraught exercise. Skepticism and fearless debate are key to the scientific process, making it both vital and incredibly difficult to characterize and identify dissent that is problematic in its approach and consequences. Indeed, as de Melo-Martín and Intemann show, the criteria commonly proposed as means of identifying inappropriate dissent are flawed and the strategies generally recommended to tackle such dissent are not only ineffective but could even make the situation worse. -/- The Fight Against Doubt proposes that progress on this front can best be achieved by enhancing the trustworthiness of the scientific community and by being more realistic about the limits of science when it comes to policymaking. It shows that a richer understanding of the context in which science operates is needed to disarm problematic dissent and those who deploy it. This, the authors argue, is the best way forward, rather than diagnosing the many instances of wrong-headed dissent. (shrink)
The aim of this paper is to show that critics of biological explanations of human nature may be granting too much to those who propose such explanations when they argue that the truth of genetic determinism implies an end to critical evaluation and reform of our social institutions. This is the case because when we argue that biological determinism exempts us from social critique we are erroneously presupposing that our social values, practices, and institutions have nothing to do with what (...) makes biological explanations troublesome. My argument is that what constitutes a problem for those who are concerned with social justice is not the fact that particular behaviours may be genetically determined, but the fact that our value system and social institutions create the conditions that make such behaviours problematic. Thus, I will argue that even if genetic determinism were correct, the requirement of assessing and transforming our social practices and institutions would be far from superfluous. Biology is rarely destiny for human beings and the institutions they create. (shrink)
Reprogenetic technologies, which combine the power of reproductive techniques with the tools of genetic science and technology, promise prospective parents a remarkable degree of control to pick and choose the likely characteristics of their offspring. Not only can they select embryos with or without particular genetically-related diseases and disabilities but also choose embryos with non-disease related traits such as sex. -/- Prominent authors such as Agar, Buchanan, DeGrazia, Green, Harris, Robertson, Savulescu, and Silver have flocked to the banner of reprogenetics. (...) For them, increased reproductive choice and reduced suffering through the elimination of genetic disease and disability are just the first step. They advocate use of these technologies to create beings who enjoy longer and healthier lives, possess greater intellectual capacities, and are capable of more refined emotional experiences. Indeed, Harris and Savulescu in particular take reprogenetic technologies to be so valuable to human beings that they have insisted that their use is not only morally permissible but morally required. -/- Rethinking Reprogenetics challenges this mainstream view with a contextualised, gender-attentive philosophical perspective. De Melo-Martín demonstrates that you do not have to be a Luddite, social conservative, or religious zealot to resist the siren song of reprogenetics. Pointing out the flawed nature of the arguments put forward by the technologies' proponents, Rethinking Reprogenetics reveals the problematic nature of the assumptions underpinning current evaluations of these technologies and offers a framework for a more critical and skeptical assessment. (shrink)
It might come as a surprise to many that Spain, a country with a strong Catholic tradition that officially banned contraceptive technologies until 1978, has some of the most liberal regulations in assisted reproduction in the world. Law No. 35/1988 was one of the first and most detailed acts of legislation undertaken on the subject of assisted-conception procedures. Indeed, not only did the law permit research on nonviable embryos, it made assisted reproductive technologies available to any woman, whether married or (...) not, through the national healthcare system. (shrink)
Several feminist philosophers of science have argued that social and political values are compatible with, and may even enhance, scientific objectivity. A variety of normative recommendations have emerged regarding how to identify, manage, and critically evaluate social values in science. In particular, several feminist theorists have argued that scientific communities ought to: 1) include researchers with diverse experiences, interests, and values, with equal opportunity and authority to scrutinize research; 2) investigate or "study up" scientific phenomena from the perspectives, interests, and (...) conditions of marginalized stakeholders potentially affected by the research; and 3) make gender, ethnicity, class, and geographical location "visible," or use them as categories of analysis when appropriate. Yet, more work is needed to determine what exactly these recommendations would require, and the benefits they would yield, in specific research contexts. Using the recent development of the human papillomavirus (HPV) vaccines, we examine how these three feminist recommendations would have applied. We argue that these principles would have yielded several epistemic and social benefits in the HPV case, as well as in biomedical research more generally. That is, biomedical research guided by these principles would not only be epistemically superior, but also more socially responsible. (shrink)
While various definitions of moral distress have been proposed, some agreement exists that it results from illegitimate constraints in clinical practice affecting healthcare professionals’ moral agency. If we are to reduce moral distress, instruments measuring it should provide relevant information about such illegitimate constraints. Unfortunately, existing instruments fail to do so. We discuss here several shortcomings of major instruments in use: their inability to determine whether reports of moral distress involve an accurate assessment of the requisite clinical and logistical facts (...) in play, whether the distress in question is aptly characterized as moral, and whether the moral distress reported is an appropriate target of elimination. Such failures seriously limit the ability of empirical work on moral distress to foster appropriate change. (shrink)
An increase in global violence has forced the displacement of more than 70 million people, including 26 million refugees and 3.5 asylum seekers. Refugees and asylum seekers face serious socioeconomic and healthcare barriers and are therefore particularly vulnerable to physical and mental health risks, which are sometimes exacerbated by immigration policies and local social discriminations. Calls for a strong evidence base for humanitarian action have encouraged conducting research to address the barriers and needs of refugees and asylum seekers. Given the (...) role of epigenetics factors to mediate the effect of psychological and environmental exposures, epigenetic modifications have been used as biomarkers for life adversity and disease states. Therefore, epigenetic research can be potentially beneficial to address some of the issues associated with refugees and asylum seekers. Here, we review the value of previous and ongoing epigenetic studies with traumatized populations, explore some of the ethical challenges associated with epigenetic research with refugees and asylees and offer suggestions to address or mitigate some of these challenges. Researchers have an ethical responsibility to implement strategies to minimize the harms and maximize the short and long-term benefits to refugee and asylee participants. (shrink)
The argument from inductive risk has been embraced by many as a successful account of the role of values in science that challenges the value-free ideal. We argue that it is not obvious that the argument from inductive risk actually undermines the value-free ideal. This is because the inductive risk argument endorses an assumption held by proponents of the value-free ideal: that contextual values never play an appropriate role in determining evidence. We show that challenging the value-free ideal ultimately requires (...) rejecting this assumption. (shrink)
Recently, some have proposed moral bioenhancement as a solution to the serious moral evils that humans face. Seemingly disillusioned with traditional methods of moral education, proponents of bioenhancement believe that we should pursue and apply biotechnological means to morally enhance human beings. Such proposal has generated a lively debate about the permissibility of moral bioenhancement. We argue here that such debate is specious. The claim that moral bioenhancement is a solution - whether permissible or not - to the serious moral (...) problems that affect human beings is based on several problematic framing assumptions. We evaluate here three of such assumptions: the first rests on a contested understanding of morality, the second consist in a mistaken conception of human moral problems, and the third relates to problematic presuppositions grounding the interpretation of existent scientific evidence presented to defend moral bioenhancement. Once these framing assumptions are identified and critically evaluated, it becomes clear that the moral bioenhancement debate is misguided. (shrink)
A new reprogenetic technology, mitochondrial replacement, is making its appearance and, unsurprisingly given its promise to wash off our earthly stains --or at least the scourges of sexual reproduction--, John Harris finds only reasons to celebrate this new scientific feat.1 In fact, he finds mitochondrial replacement techniques (MRTs) so “unreservedly welcome” that he believes those who reject them suffer from “a large degree of desperation and not a little callousness.”2 Believing myself to be neither desperate nor callous, but finding myself (...) also no closer at all – not even after reading his article—to following Harris in welcoming these technologies wholeheartedly, it seems appropriate to respond. (shrink)
Several have argued that the aims of scientific research are not always independent of social and ethical values. Yet this is often assumed only to have implications for decisions about what is studied, or which research projects are funded, and not for methodological decisions or standards of evidence. Using the case of the recently developed HPV vaccines, we argue that the social aims of research can also play important roles in justifying decisions about (1) how research problems are defined in (...) drug development, (2) evidentiary standards used in testing drug “success”, and (3) clinical trial methodology. As a result, attending to the social aims at stake in particular research contexts will produce more rational methodological decisions as well as more socially relevant science. (shrink)
Book Symposium on Andrew Feenberg’s Between Reason and Experience: Essays in Technology and Modernity Content Type Journal Article Pages 203-226 DOI 10.1007/s13347-011-0017-8 Authors Inmaculada de Melo-Martín, Division of Medical Ethics, Weill Cornell Medical College, New York, NY 10065, USA David B. Ingram, Loyola University Chicago, 6525 North Sheridan Road, Chicago, IL 60626, USA Sally Wyatt, e-Humanities Group, Royal Netherlands Academy of Arts and Sciences (KNAW) & Maastricht University, Cruquiusweg 31, 1019 AT Amsterdam, The Netherlands Yoko Arisaka, Forschungsinstitut für (...) Philosophie Hannover, Gerberstrasse 26, 30169 Hannover, Germany Andrew Feenberg, School of Communication, Simon Fraser University at Harbour Centre, 515 West Hastings Street, Vancouver, BC V6B 5K3, Canada Journal Philosophy & Technology Online ISSN 2210-5441 Print ISSN 2210-5433 Journal Volume Volume 24 Journal Issue Volume 24, Number 2. (shrink)
Many have argued that allowing and encouraging public avenues for dissent and critical evaluation of scientific research is a necessary condition for promoting the objectivity of scientific communities and advancing scientific knowledge . The history of science reveals many cases where an existing scientific consensus was later shown to be wrong . Dissent plays a crucial role in uncovering potential problems and limitations of consensus views. Thus, many have argued that scientific communities ought to increase opportunities for dissenting views to (...) be heard and taken seriously. Such opportunities are necessary for both limiting the influence .. (shrink)
The disclosure policies of scientific journals now require that investigators provide information about financial interests relevant to their research. The main goals of these policies are to prevent bias from occurring, to help identify bias when it occurs, and to avoid the appearance of bias. We argue here that such policies do little to help achieve these goals, and we suggest more effective alternatives.
Dissent is thought to play a valuable role in science, so that scientific communities ought to create opportunities for receiving critical feedback and take dissenting views seriously. There is concern, however, that some dissent does more harm than good. Dissent on climate change and evolutionary theory, for example, has confused the public, created doubt about existing consensus, derailed public policy, and forced scientists to devote resources to respond. Are there limits to the extent to which scientific communities have obligations to (...) seek and engage dissenting views? We consider the two main criteria that have been offered for what constitutes “normatively appropriate dissent” or the sort of dissent that ought to have the opportunity to be heard and taken seriously. Many have argued that dissenters must (1) engage in uptake of criticism against their own views and (2) share some standards for theory appraisal. We argue these criteria ultimately are unsuccessful. (shrink)
Although surprising to some proponents of sex selection for non-medical reasons (Dahl 2005), a considerable amount of critical debate has been raised by this practice (Blyth, Frith, and Crawshaw 2008; Dawson and Trounson 1996; Dickens 2002; Harris 2005; Heyd 2003; Holm 2004; Macklin 2010; Malpani 2002; McDougall 2005; Purdy 2007; Seavilleklein and Sherwin 2007; Steinbock 2002; Strange and Chadwick 2010; Wilkinson 2008). While abortion or infanticide has long been used as means of sex selection, a new technology—preimplantation genetic diagnosis (PGD)—has (...) become a highly efficient, and arguably less controversial, way of ensuring the birth of a child of a particular sex. PGD, used in combination with in vitro .. (shrink)
Although there is increased recognition of the inevitable--and perhaps sometimes beneficial-- role of values in scientific inquiry, there are also growing concerns about the potential for commercial values to lead to bias. This is particularly evident in biomedical research. There is a concern that conflicts of interest created by commercialization may lead to biased reasoning or methodological choices in testing drugs and medical interventions. In addition, such interests may lead research in directions that are unresponsive to pressing social needs, when (...) it is profitable to do so. Feminist philosophy of science seems particularly well situated to provide resources to help address such concerns because this literature has both 1) theorized about how to minimize biases in science, e.g., sexist or androcentric biases, and 2) generated accounts of objectivity that do not require individual scientists to be value-neutral or disinterested. Two such accounts are assessed in relation to concerns about commercial bias: those offered by feminist empiricism and standpoint feminism. We argue that standpoint feminism is more promising because it has resources to address, not just the epistemological, but also the inescapably ethical dimensions of commercial bias. (shrink)
Proponents of moral enhancement believe that we should pursue and apply biotechnological means to morally enhance human beings, as failing to do so is likely to lead to humanity's demise. Unsurprisingly, these proposals have generated a substantial amount of debate about the moral permissibility of using such interventions. Here I put aside concerns about the permissibility of moral enhancement and focus on the conceptual and evidentiary grounds for the moral enhancement project. I argue that such grounds are quite precarious.
Because of the important benefits that biomedical research offers to humans, some have argued that people have a general moral obligation to participate in research. Although the defense of such a putative moral duty has raised controversy, few scholars, on either side of the debate, have attended to the social context in which research takes place and where such an obligation will be discharged. By reflecting on the social context in which a presumed duty to participate in research will obtain, (...) this article shows that decontextualized discussions of this putative moral obligation are problematic. (shrink)
Recent advances in biotechnologies have led to speculations about enhancing human beings. Many of the moral arguments presented to defend human enhancement technologies have been limited to discussions of their risks and benefits. The author argues that in so far as ethical arguments focus primarily on risks and benefits of human enhancement technologies, these arguments will be insufficient to provide a robust defence of these technologies. This is so because the belief that an assessment of risks and benefits is a (...) sufficient ethical evaluation of these technologies incorrectly presupposes that risk assessments do not involve value judgements. Second, it presupposes a reductionist conception of ethics as merely a risk management instrument. Each of these assumptions separates ethical evaluation from discussion and appraisal of ends and means and thus leaves important—indeed, essential—ethical considerations out of view. Once these problematic assumptions are rejected, it becomes clear that an adequate defence of human enhancement technologies requires more than a simple balance of their risks and benefits. (shrink)
A growing number of jurisdictions hold that gamete donors must be identifiable to the children born with their eggs or sperm, on grounds that being able to know about one's genetic origins is a fundamental moral right. But the argument for that belief has not yet been adequately made.
The use of genome embryo editing tools in reproduction is often touted as a way to ensure the birth of healthy and genetically related children. Many would agree that this is a worthy goal. The purpose of this paper is to argue that, if we are concerned with justice, accepting such goal as morally appropriate commits one to rejecting the development of embryo editing for reproductive purposes. This is so because safer and more effective means exist that can allow many (...) more prospective parents to achieve the same valued goal and that offer additional benefits. (shrink)
Despite increasing recognition of the ways in which ethical and social values play a role in science (Kitcher 2001; Longino 1990, 2002), scientists are often still reluctant to acknowledge or discuss ethical and social values at stake in their research. Even when research is closely connected to developing public policy, it is generally held that it should be empirical data, and not the values of scientists, that inform policy. According to this view, scientists need not, and should not, endorse non-epistemic (...) values related to their research, as doing so may bias their assessment of what the evidence is. As a result, debates over science-based policy tend to be construed solely as empirical discussions to be .. (shrink)
The U.S. Food and Drug Administration announced recently that food products derived from some animal clones and their offspring are safe for human consumption. In response to criticism that it had failed to engage with ethical, social, and economic concerns raised by livestock cloning, the FDA argued that addressing normative issues prior to issuing a final ruling on animal cloning is not part of its mission. In this article, the authors reject the FDA's claim that its mission to protect and (...) advance public health can be accomplished without considering ethical issues or without making value judgments. The authors offer two arguments in support of their position. First, the agency's mission statement presupposes significant normative commitments and judgments. Second, the FDA's risk assessment of food products from cloned animals and their offspring is itself clearly shaped by a variety of normative commitments. (shrink)
Discussions about whether new biomedical technologies threaten or violate human dignity are now common. Indeed, appeals to human dignity have played a central role in national and international debates about whether to allow particular kinds of biomedical investigations. The focus of this paper is on chimera research. I argue here that both those who claim that particular types of human-nonhuman chimera research threaten human dignity and those who argue that such threat does not exist fail to make their case. I (...) first introduce some of the arguments that have been offered supporting the claim that the creation of certain sorts of chimeras threatens or violates human dignity. I next present opponents' assessments of such arguments. Finally I critically analyze both the critics' and the supporters' claims about whether chimera research threatens human dignity. (shrink)