Genetic Ethics, Misc

Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental to (...) the practice of genetic counseling as guided by concerns of justice and equity. We proceed in two steps. First, we explain how informed consent is flawed as a practical concept. Second, we show how the inadequacy of informed consent illuminates the animating core of disability critiques of genetic counseling: the issue of ableism. We argue that the problem of ableism cannot be solved with informed consent because it is not merely a problem of information, but also of epistemic schemas. We suggest that what we call critically informed consent is better suited to move genetic counseling from being aware of the problem of ableism to becoming actively anti-ableist. (shrink)

An increasing number of European research projects return, or plan to return, individual genomic research results (IRR) to participants. While data access is a data subject’s right under the General Data Protection Regulation (GDPR), and many legal and ethical guidelines allow or require participants to receive personal data generated in research, the practice of returning results is not straightforward and raises several practical and ethical issues. Existing guidelines focusing on return of IRR are mostly project-specific, only discuss which results to (...) return, or were developed outside Europe. To address this gap, we analysed existing normative documents identified online using inductive content analysis. We used this analysis to develop a checklist of steps to assist European researchers considering whether to return IRR to participants. We then sought feedback on the checklist from an interdisciplinary panel of European experts (clinicians, clinical researchers, population-based researchers, biobank managers, ethicists, lawyers and policy makers) to refine the checklist. The checklist outlines seven major components researchers should consider when determining whether, and how, to return results to adult research participants: 1) Decide which results to return; 2) Develop a plan for return of results; 3) Obtain participant informed consent; 4) Collect and analyse data; 5) Confirm results; 6) Disclose research results; 7) Follow-up and monitor. Our checklist provides a clear outline of the steps European researchers can follow to develop ethical and sustainable result return pathways within their own research projects. Further legal analysis is required to ensure this checklist complies with relevant domestic laws. (shrink)

Purpose/Background. The present research focuses on the debate on transhumanism/bioconservatism from the perspective of empirical bioethics, that is, making use of em-pirical evidence in the process of moral reasoning. Its objective is to propose a metho-dological guide for the approach and resolution of moral problems concerning human enhancement. Methodology/Approach. The method Step-wise Ethical Human Enhancemet (SWEH) is proposed. It is a guide consisting of 11 questions that are the result of the adaptation of the guidelines for identifying a human enhancement (...) procedure as ethical developed by Julian Savulescu to the method of Step-wise Empirical Contributions elaborated by Pascal Borry. An applicative example on the morality of biohacking RFID implants is provided. Results/Findings. SWEH proposes that human enhancement procedures might be approached as specific problems and that the identified moral norm might be rewritten as a descriptive proposition that serves as a hypothesis that will be evaluated in the light of empirical evidence. The evaluation of the proposition, and thus of moral reasoning, will be done with the help of the information gathered by the 11 questions. Discussion/Conclusions/Contributions. SWEH can serve to provide a first answer on the morality of a specific human enhancement procedure, but not an absolute one, as the result may vary depending on the information obtained in the future. It also highli-ghts gaps in empirical research related to the procedure it addresses. The method is a first methodological guide that could be revised and improved. (shrink)

Creating Future People offers readers a fast-paced primer on how new genetic technologies will enable parents to influence the traits of their children, including their intelligence, moral capacities, physical appearances, and immune systems. It deftly explains the science of gene editing and embryo selection, and raises the central moral questions with colorful language and a brisk style. Jonathan Anomaly takes seriously the diversity of preferences parents have, and the limits policymakers face in regulating what could soon be a global market (...) for reproductive technology. He argues that once embryo selection for complex traits happens it will change the moral landscape by altering the incentives available to parents. All of us will take an interest in the traits everyone else selects, and this will present coordination problems that previous writers on genetic enhancement have failed to consider. Anomaly navigates difficult ethical issues with vivid language and scientifically-informed speculation about how genetic engineering will transform humanity. Key Features: Offers clear explanations of scientific concepts Explores important moral questions without academic jargon Brings discoveries from different fields together to give us a sense of where humanity is headed. (shrink)

In a recent article, Marilyn Baffoe-Bonnie offers three arguments for conducting CRISPR/Cas9 biotechnology research to cure sickle-cell disease (SCD) based on addressing historical and current injustices in SCD research and care. I show that her second and third arguments suffer from roughly the same defect, which is that they really argue for something else rather than for conducting CRISPR/Cas9 research in particular. For instance, the second argument argues that conducting this gene therapy research would improve the relationship between SCD sufferers (...) (who are mostly of African descent) and health care providers. But really what is essential in improving this relationship is for those providers to genuinely care and be concerned, and this could be lacking even with the CRISPR research being done. Indeed, this relationship could be improved even without that research being done, as long as there is genuine concern. Thus, this argument actually argues for the need for genuine concern. As for the third argument, one (of two) problems arises because it claims that CRISPR research for SCD should be pursued because the benefits would be shared by even non-research-participants, as non-participants would be encouraged. However, this argues for any research for SCD, not for CRISPR research in particular. I conclude that a better justice-based argument will use only Baffoe-Bonnie’s first argument, which is based on historic neglect of an actual cure for SCD (going beyond merely management or transplant therapies). (shrink)

Cloning research caught a great deal of attention when Dolly the sheep was born (§4). While some fear surrounded the attainment (§§14-15), Wilmutʼs research itself has grown well, providing a less vicious manner to gain ES cells (§12). In this article, we review the progress of cloning research along with the concern of medical circles about its application to reproductive cloning, that is to say, making replicas of human beings (§§16-21). Note that all the content is ascribed to the author (...) alone, not to Musashino University. (shrink)

Current debate and policy surrounding the use of genetic editing in humans often relies on a binary distinction between therapy and human enhancement. In this paper, we argue that this dichotomy fails to take into account perhaps the most significant potential uses of CRISPR-Cas9 gene editing in humans. We argue that genetic treatment of sporadic Alzheimer’s disease, breast- and ovarian-cancer causing BRCA1/2 mutations and the introduction of HIV resistance in humans should be considered within a new category of genetic protection (...) treatments. We find that if this category is not introduced, life-altering research might be unnecessarily limited by current or future policy. Otherwise ad hoc decisions might be made, which introduce a risk of unforeseen moral costs, and might overlook or fail to address some important opportunities. (shrink)

This is a volume of twelve essays concerning the fundamental tension in personalised medicine between individual choice and the common good.

The theory of evolution of complex and comprising of human systems and algorithm for its constructing are the synthesis of evolutionary epistemology, philosophical anthropology and concrete scientific empirical basis in modern (transdisciplinary) science. «Trans-disciplinary» in the context is interpreted as a completely new epistemological situation, which is fraught with the initiation of a civilizational crisis. Philosophy and ideology of technogenic civilization is based on the possibility of unambiguous demarcation of public value and descriptive scientific discourses (1), and the object and (...) subject of the cognitive process (2). Both of these attributes are no longer valid. For mass, everyday consciousness and institutional philosophical tradition it is intuitively obvious that having the ability to control the evolutionary process, Homo sapiens came close to the borders of their own biological and cultural identity. The spontaneous coevolutionary process of interaction between the «subject» (rational living organisms) and the «object» (material world), is the teleological trend of the movement towards the complete rationalization of the World as It Is, its merger with the World of Due. The stratification of the global evolutionary process into selective and semantic (teleological) coevolutionary and therefore ontologically inseparable components follows. With the entry of anthropogenic civilization into the stage of the information society, firsty, the post-academic phase of the historical evolution of scientific rationality began, the attributes of which are the specific methodology of scientific knowledge, scientific ethos and ontology. Bioethics as a phenomenon of intellectual culture represents a natural philosophical core of modern post- academic (human-dimensional) science, in which the ethical neutrality of scientific theory principle is inapplicable, and elements of public-axiological and scientific-descriptive discourses are integrated into a single logic construction. As result, hermeneutics precedes epistemology not only methodologically, but also meaningfully, and natural philosophy is regaining the status of the backbone of the theory of evolution – in an explicit form. (shrink)

The paper discusses the possibility that the benefits of pharmacogenomics will not be distributed equally and will create orphan populations. I argue that since these inequalities are not substantially different from those produced by ‘traditional’ drugs and are not generated with the intention to discriminate, their production needs not be unethical. Still, the final result is going against deep-seated moral feelings and intuitions, as well as broadly accepted principles of just distribution of health outcomes and healthcare. I thus propose two (...) provisos that would prevent the most offensive outcomes and moderate the scope of the produced inequalities. The first proviso rejects pharmacogenomics innovations that worsen existing group inequalities and aggravate the disadvantage of communities with a history of discrimination. The second proviso requires that there is a strategy in place to even out as much as possible the distribution of benefits in the future and that a system of compensations is in place for pharmacogenomic orphans. Given that only one moral problem generated by pharmacogenomics has been tackled, the list of provisos might be expanded when other issues are considered. (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)

Beliefs about the moral status of children have changed significantly in recent decades in the Western world. At the same time, knowledge about likely consequences for children of individual, parental, and societal choices has grown, as has the array of choices that (prospective) parents may have at their disposal. The intersection between these beliefs, this new knowledge, and these new choices has created a minefield of expectations from parents and a seemingly ever-expanding responsibility towards their children. Some of these new (...) challenges have resulted from progress in genetics and neuroscience. It is these challenges that we focus on in this introduction and volume. (shrink)

Om människan någon gång kommer att få förmågan att skapa nya livsformer, hur kommer det att påverka livets värde? Detta är en fråga som kan vara en källa till oro när man diskuterar konstgjort liv, men är oron befogad? I ett försök att svara på den frågan kommer jag att gå igenom några möjliga skäl till varför förmågan att skapa konstgjort liv skulle hota livets värde, och se om de verkligen ger oss skäl att oroa oss.

The book discusses some of the stages in the development of genetics, biotechnology in terms of basic strategy of humanity towards the formation of a modern agrarian civilization. Agricultural civilization is seen as part of the biosphere and primary user of its energy flows. Consistently a steps of creation of management tools for live objects to increasing the number of food security of mankind are outlines. The elements of the biosphere degradation started in the results of human activities, and the (...) ways of their compensation. are discussed.The importance of the cooperation of experts in different areas of knowledge in the development of new approaches to the management of genetic resources of the planet is discussed too. (shrink)

The idea of personalised medicine (PM) has gathered momentum recently, attracting funding and generating hopes as well as scepticism. As PM gives rise to differing interpretations, there have been several attempts to clarify the concept. In an influential paper published in this journal, Schleidgen and colleagues have proposed a precise and narrow definition of PM on the basis of a systematic literature review. Given that their conclusion is at odds with those of other recent attempts to understand PM, we consider (...) whether their systematic review gives them an edge over competing interpretations. We have found some methodological weaknesses and questionable assumptions in Schleidgen and colleagues’ attempt to provide a more specific definition of PM. Our perplexities concern the lack of criteria for assessing the epistemic strength of the definitions that they consider, as well as the logical principles used to extract a more precise definition, the narrowness of the pool from which they have drawn their empirical data, and finally their overlooking the fact that definitions depend on the context of use. We are also worried that their ethical assumption that only patients’ interests are legitimate is too simplistic and drives all other stakeholders’ interests—including those that are justifiable—underground, thus compromising any hope of a transparent and fair negotiation among a plurality of actors and interests. As an alternative to the shortcomings of attempting a semantic disciplining of the concept we propose a pragmatic approach. Rather than considering PM to be a scientific concept in need of precise demarcation, we look at it as an open and negotiable concept used in a variety of contexts including at the level of orienting research goals and policy objectives. We believe that since PM is still more an ideal than an achieved reality, a plurality of visions is to be expected and we need to pay attention to the people, reasons and interests behind these alternative conceptions. In other words, the logic and politics of PM cannot be disentangled and disagreements need to be tackled addressing the normative and strategic conflicts behind them. (shrink)

Famous ant-man E.O. Wilson has always been one of my heroes --not only an outstanding biologist, but one of the tiny and vanishing minority of intellectuals who at least dares to hint at the truth about our nature that others fail to grasp, or insofar as they do grasp, studiously avoid for of political expedience. Sadly, he is ending his long career in a most sordid fashion as a party to an ignorant and arrogant attack on science motivated at least (...) in part by religious fervor. It shows the vile consequences when universities accept money from religious groups, science journals are so awed by big names that they avoid proper peer review, and when egos are permitted to get out of control. It takes us into the nature of evolution, the basics of scientific methodology, how math relates to science, what constitutes a theory, and even what attitudes to religion and generosity are appropriate as we inexorably approach the collapse of industrial civilization. -/- Those wishing a comprehensive up to date framework for human behavior from the modern two systems view may consult my book ‘The Logical Structure of Philosophy, Psychology, Mind and Language in Ludwig Wittgenstein and John Searle’ 2nd ed (2019). Those interested in more of my writings may see ‘Talking Monkeys--Philosophy, Psychology, Science, Religion and Politics on a Doomed Planet--Articles and Reviews 2006-2019 3rd ed (2019), The Logical Structure of Human Behavior (2019), and Suicidal Utopian Delusions in the 21st Century 4th ed (2019). (shrink)

This short paper, written for a wide audience, introduces "science and values" topics as they have arisen in the context of eugenics. The paper especially focuses on the context of 20th century eugenics in western Canada, where eugenic legislation in two provinces was not repealed until the 1970s and thousands of people were sterilized without their consent. A framework for understanding science-value relationships within this context is discussed, and so too is recent relevant work in philosophy of science.

DNA possesses a double nature: it is both an analog chemical compound and a digital carrier of information. By distinguishing these two aspects, this paper aims to reevaluate the legally and politically influential idea that the human genome forms part of the common heritage of mankind, an idea which is thought to conflict with the practice of patenting DNA. The paper explores the lines of reasoning that lead to the common heritage idea, articulates and motivates what emerges as the most (...) viable version of it, and assesses the extent to which this version conflicts with gene-patenting practices as exemplified by the U.S. regime. It concludes that the genome is best thought of as a repository of information to which humanity has a fiduciary relationship, and that on this view, the perceived conflict with gene-patenting largely dissolves. (shrink)

A Troublesome Inheritance, by Nicholas Wade, should be read by anyone interested in race and recent human evolution. Wade deserves credit for challenging the popular dog­ma that biological differences between groups either don't exist or cannot ex­plain the relative success of different groups at different tasks. Wade's work should be read alongside another re­cent book, The 10,000 Year Explosion: How Civilization Accelerated Human Evolution, by Gregory Cochran and Henry Harpending. Together, these books represent a ma­jor turning point in the public (...) debate about the speed with which relatively isolated groups can evolve: both books suggest that small genetic differences between members of different groups can have large impacts on their abilities and propensities, which in turn affect the outcomes of the societies in which they live. (shrink)

South African law currently forbids those seeking to arrange a surrogate motherhood agreement from creating a child that will not be genetically related to at least one of them. For a surrogacy contract to be legally valid, there must be a ‘genetic link’ between the child created through a surrogate and the parents who will raise it. Currently, this law is being challenged in the High Court of South Africa, and in this article I critically explore salient ethical facets of (...) the dispute. I argue that the law is unjust and should be revised. (shrink)

Recent epidemiological reports of associations between socioeconomic status and epigenetic markers that predict vulnerability to diseases are bringing to light substantial biological effects of social inequalities. Here, we start the discussion of the moral consequences of these findings. We firstly highlight their explanatory importance in the context of the research program on the Developmental Origins of Health and Disease (DOHaD) and the social determinants of health. In the second section, we review some theories of the moral status of health inequalities. (...) Rather than a complete outline of the debate, we single out those theories that rest on the principle of equality of opportunity and analyze the consequences of DOHaD and epigenetics for these particular conceptions of justice. We argue that DOHaD and epigenetics reshape the conceptual distinction between natural and acquired traits on which these theories rely and might provide important policy tools to tackle unjust distributions of health. (shrink)

Should we do whatever science lets us do? This short introduction in the 'All That Matters' series shows how developments in biotechnology, such as genetics, stem cell research and artificial reproduction, arouse both our greatest hopes and our greatest fears. Many people invest the new biotechnology with all the aspirations and faith once accorded to religious salvation. But does everyone benefit equally from scientific progress? This book argues that although we've entered new scientific territory, there is no need to jettison (...) our existing moral sense. By discussing a range of real-life cases, it equips readers to make up their own minds on these important questions. Good science and good ethics needn't be contradictory. (shrink)

I argue that embryonic stem cell research is fair to the embryo, even on the assumption that the embryo has attained full personhood and an attendant right to life at conception. This is because the only feasible alternatives open to the embryo are to exist briefly in an unconscious state and be killed or to not exist at all. Hence, one is neither depriving the embryo of an enduring life it would otherwise have had nor is one causing the embryo (...) pain. I also argue that a rational agent in a situation relevantly similar to that of the embryo would consent to such research, and I use this insight to ground two justice-based arguments in favor of this research. (shrink)

'An alarming and illuminating book. The story of how we have allowed private corporations to patent genes, to stockpile human tissue, and in short to make profits out of what many people feel ought to be common goods is a shocking one. No one with any interest at all in medicine and society and how they interact should miss this book, and it should be required reading for every medical student,'--Philip Pullman.

Scientific knowledge of how genes work is giving human beings unprecedented power to shape future human lives, for better or for worse. People involved in government, business and science are facing new questions related to the application of genetic technologies to human beings. Our technical knowledge is growing fast, but does our moral wisdom grow at the same rate?

How heavily should ethical considerations weigh in allowing or disallowing genetic patents? The concept of 'ordre public' can be useful in offsetting a simple utilitarian view.

Review of Graeme Laurie, Genetic Privacy: A Challenge to Medico-Legal Norms.

My focus in this paper is the question of the moral acceptability of attempts to modify the human genome. Much of the debate in this area has revolved around the distinction between supposedly therapeutic modification on the one hand, and eugenic modification on the other. In the first part of the paper I reject some recent arguments against genetic engineering. In the second part I seek to distinguish between permissible and impermissible forms of intervention in such a way that does (...) not appeal to the therapeutic/eugenic distinction. If I am right much of what we would intuitively call eugenic intervention will be morally acceptable. Central to my argument is an asymmetry in the way genetic engineers can influence a person's capacities on the one hand and life‐goals on the other. Forms of genetic intervention that have a high probability of producing a mismatch of life‐goals and capacities will be ruled out. (shrink)

This manuscript is intended to illustrate the existence of a natural ethic as a universal and special case in which the notion of proximity differs from the reflexively perceived physical notion that is both commonly and scientifically employed. In this case actual proximity in nature is proposed to diverge from the physical lines construed to connect points to be a function of relations of the lines of perception as the components of a universal volume that is energetic and active, an (...) active "line of sight" to a single unique surface composed of all lines of sight, in contrast to a common notion of seeing based on connected points, and emerged as a function of past, transparent to witness, processes, in synergy with the more apparent, temporal and physical proximal , and possesses a logic that is based upon the same mathematical means of operations that are commonly known reflexively. This scheme, the nature of the natural ethic postulated precludes genetic manipulation as unethical in that it violates natural inherent, inherited proximities, synergies of past and present as, in name, nature itself as genetic and emerging. (shrink)

The author has extensive law enforcement experience and the paper is intended to provoke thought on the use of technology as it pertains to information sharing between the police and the private sector. -/- As the world edges closer and closer to the convergence of man and machine, the human capacity to retrieve information is increasing by leaps and bounds. We are on the verge of knowing everything and anything there is to know, and literally in the blink of an (...) eye! -/- This means that police will have the capacity to learn everything about everyone with the only restriction being privacy legislation. But it also means that those involved in immoral, unlawful or illegal activity will have that same capacity and with no such restriction. ‘Bad Brother’ may be far more dangerous than ‘Big Brother!' -/- The global community requires a secure and credible system to retrieve and assess all of the information ‘generally available to the public.' A system that will strive to keep ‘Big Brother’ in check and ‘Bad Brother’ out, all the while providing a means of alerting citizens to genuine risks or to dangerous people. Such as system would help diffuse the systemic inaccurate and harmful profiling that is often based on rumours and innuendo. -/- There is an identified public-private partnership opportunity. A chance to work with privacy advocate groups and background checking private companies to define, design and deliver on something that will be of immense benefit to citizens around the globe. -/- We have an opportunity to create something that will work to ensure that only the best information gets used and in a moralistic, lawful and legal way! Technology continues to move forward at incomprehensible speeds – failure to act could have serious consequences. (shrink)