In the last third of the twentieth century, humanists and social scientists argued that attention to genetics would heighten already‐existing genetic determinism, which in turn would intensify negative social outcomes, especially sexism, racism, ableism, and harshness to criminals. They assumed that laypeople are at risk of becoming genetic essentialists. I will call this the “laypeople are genetic essentialists model.” This model has not accurately predicted psychosocial impacts of findings from genetics research. I will be arguing that the (...) failure of the model can be traced to its inability to recognize the complexity of laypeople’s attitudes; its incorrect theory of how beliefs, attitudes, and discourse function; and its blindness to how academics’ own interests can override the available evidence. More specifically, I suggest that the substantial data about laypeople’s deployment of genetics supports what I will call the “laypeople are strategic essentialists model” better than the “laypeople are genetic essentialists model.” The strategic essentialists model holds that people tend to store multiple categories, including multiple causal forces, that they deploy “strategically” to serve context‐dependent goals. It will be difficult for academics to reorient ourselves to model laypeople as sophisticated strategic essentialists rather than as naïve genetic essentialists. Perhaps a little shift, however, will be of value. (shrink)

The work of scientists and doctors in advancing genetic research and its applications has been accompanied by plenty of discussion in the popular press—from Good Housekeeping and Forbes to Ms. and the Congressional Record—about such ...

Signs and States, programme financé par l'ERG (European Research Council), a pour but d'explorer la sémiologie de l'Etat du XIIIe siècle au milieu du XVIIe siècle. Textes, performances, images, liturgies, sons et musiques, architectures, structures spatiales, tout ce qui contribue à la communication des sociétés politiques, tout ce qu'exprime l'idéel des individus et leur imaginaire, est ici passé au crible dans trois séries de rencontres dont les actes ont été rassemblés dans une collection, Le pouvoir symbolique en Occident (1300-1640). Ces (...) volumes, adoptant une perspective pluridisciplinaire et comparative dans une visée de long terme, combinent études de cas, analyses conceptuelles et réflexions plus théoriques. Et les réponses à ce questionnaire, issu d'une réflexion sur une histoire culturelle poursuivie sur plus de cinq siècles, remettent en cause une histoire de l'Occident latin où l'on opposerait Eglise et Etat : la mutation culturelle engendrée par la réforme grégorienne qui, tout en assurant d'abord le triomphe de la papauté, a donné à l'Etat moderne les moyens d'assurer sa propre légitimité en créant les conditions d'une révolution du système de communication. Elle engendre un partage du pouvoir symbolique et des processus de légitimation avec l'Etat : la capacité de ce dernier à se légitimer par le consentement de la société politique en dehors de la contingence religieuse est une spécificité de l'Occident latin, clé de l'essor des Etats modernes européens. (shrink)

People respond to metaphors as much with regard to the emotions that they generate as to their referential, comparative contents. Interviews with non-geneticists about preferred metaphors for gene-environment interaction that illustrate this tendency are reported. These interviews also reveal the dynamic tendency of such emotional responses. A second set of interviews shows that lay people may preferentially use a metaphor of "virus" or "disease" for talking about genes, as opposed to the coding metaphors transmitted through the mass media and reportedly (...) preferred by geneticists. An explanation based on the differently situated emotions of these groups is proposed. It is proposed that the prominence of emotions in responding to genetics indicates the importance of incorporating analyses of emotions instead of simple principles into policy formulation about genetics. (shrink)

In the face of documented difficulties in the public understanding of genetics, new metaphors have been suggested. The language of information coding and processing has become deeply entrenched in the public representation of genetics, and some critics have found fault in the blueprint metaphor, a variant of the dominant theme. They have offered the language of the recipe as a preferable metaphor. The metaphors of the blueprint and the recipe are compared in respect to their deterministic implications and other associations. (...) The likelihood of the recipe metaphor framing cognition in more useful ways is called into question. (shrink)

: Genetics professionals have been reluctant to test children for adult-onset conditions because they believe this would create psychosocial harm to children not counterbalanced by significant benefits. An additional concern they express is that such testing would violate the autonomy of these children as adults. Yet weighing the harms and benefits of such testing results in a draw, with no substantial harms proven. Moreover, such testing can enhance, rather than violate the adult autonomy of these children. In deciding whether to (...) proceed with predictive testing of children, parents, mature children, and health care professionals should consider a complex of factors relevant to the particular child. The importance of these factors will vary depending on the condition at issue, the age and stage of development of the child, family dynamics, and the concerns, values, and objectives of the parents and mature child. The final decision whether to test a child for an adult-onset condition should rest with the parents and the mature child. (shrink)

This paper considers parental duties of beneficence and non-maleficence to use prenatal genetic testing for non-treatable conditions. It is proposed that this can be a duty only if the testing is essential to protect the interests of the child ie only if there is a risk of the child being born to a life worse than non-existence. It is argued here that non-existence can be rationally preferred to a severely impaired life. Uncontrollable pain and a lack of any opportunity (...) to develop a continuous self are considered to be sufficient criteria for such preference. When parents are at risk of having a child whose life would be worse than non-existence, the parents have a duty to use prenatal testing and a duty to terminate an affected pregnancy. Further, such duty does not apply to any conditions where the resulting life can be considered better than non-existence. (shrink)

Building on the emerging literature on the ethics of social enterprises (SEs), this paper advances the underexplored role of frontline workers (FLWs) as embedded agents at the interface between communities and SEs. Specifically, we uncover the subjectivity of FLWs as they navigate moral ambiguities while performing their professional roles, dealing with rules and regulations within the organizational hierarchy and living as members of local communities. Based on an inductive case study of a microfinance organization in Cameroon, we find that FLWs (...) engage in three rationalization strategies: cautious disengaging, safeguarding self-interest, and justifying relevance. Our findings offer a better understanding of the ethics of SEs by unpacking the subjectivity of FLWs. We highlight a bottom-up account of caring SEs, identify a boundary condition to subjectivity, and present a nuanced view of FLWs in embedded organizations. We also discuss the practical implications for SEs to improve their compassion and cater for the mental wellbeing of FLWs. (shrink)

Humans display more conditioned fear when the conditioned stimulus in a fear conditioning paradigm is a picture of an individual from another race than when it is a picture of an individual from their own race (Olsson, Ebert, Banaji, & Phelps, 2005). These results have been interpreted in terms of a genetic “preparedness” to learn to fear individuals from different social groups (Ohman, 2005; Olsson et al., 2005). However, the associability of conditioned stimuli is strongly influenced by prior exposure (...) to those or similar stimuli. Using the Kalman filter, a normative statistical model, this article shows that superior fear conditioning to individuals from other groups is precisely what one would expect if participants perform optimal, Bayesian inference that takes their prior exposures to the different groups into account. There is therefore no need to postulate a genetic preparedness to learn to fear individuals from other races or social groups. (shrink)

Predictive genetic testing is now routinely offered to asymptomatic adults at risk for genetic disease. However, testing of minors at risk for adult-onset conditions, where no treatment or preventive intervention exists, has evoked greater controversy and inspired a debate spanning two decades. This review aims to provide a detailed longitudinal analysis and concludes by examining the debate's current status and prospects for the future. Fifty-three relevant theoretical papers published between 1990 and December 2010 were identified, and interpretative content (...) analysis was employed to catalogue discrete arguments within these papers. Novel conclusions were drawn from this review. While the debate's first voices were raised in opposition of testing and their arguments have retained currency over many years, arguments in favour of testing, which appeared sporadically at first, have gained momentum more recently. Most arguments on both sides are testable empirical claims, so far untested, rather than abstract ethical or philosophical positions. The dispute, therein, lies not so much in whether minors should be permitted to access predictive genetic testing but whether these empirical claims on the relative benefits or harms of testing should be assessed. (shrink)

: There is a general consensus in the medical and medical ethics communities against predictive genetic testing of children for late onset conditions, but minimal consideration is given to predictive testing of asymptomatic children for disorders that present later in childhood when presymptomatic treatment cannot influence the course of the disease. In this paper, I examine the question of whether it is ethical to perform predictive testing and screening of newborns and young children for conditions that present later in (...) childhood. I consider the risks and benefits of (1) predictive testing of children from high-risk families; (2) predictive population screening for conditions that are untreatable; and (3) predictive population screening for conditions in which the efficacy of presymptomatic treatment is equivocal. I conclude in favor of parental discretion for predictive genetic testing, but against state-sponsored predictive screening for conditions that do not fulfill public health screening criteria. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Peculiarly Favored Condition of GeneticsJames J. Lee, PhD (bio) and Damien Morris, MSc (bio)Turkheimer and Greer (2024) (henceforth “T&G”) make some fair points about problems in the scientific profession, including the regrettable tendency to promise practical applications of research that then never materialize. However, T&G’s sustained critique of a body of work associated with one particular researcher to make these general points struck us as uncharitable. More (...) pressingly, we feel that the far-reaching conclusions that T&G attempt to draw from the results they review from the Spit for Science (S4S) cohort are unjustified and risk misleading readers that psychiatric and behavioral genetics is in a parlous state.T&G state that S4S “produced a clear answer to the question it was designed to address,” namely, that its results “unambiguously contradict the hypothesis that alcohol-related behaviors have a meaningful genetic basis.” But S4S cannot possibly have provided affirmative evidence for the null hypothesis, because as a single cohort it lacked the statistical power to do so. Elsewhere T&G acknowledge that the sample size of S4S does not suffice for many purposes; they cannot have it both ways. When GCTA has been applied to samples of greater size, it has unambiguously supported the hypothesis that alcohol-related behaviors have a meaningful genetic basis. The UK Biobank yielded estimates exceeding 0.10 for the contribution of single nucleotide polymorphisms (SNPs) with minor allele frequency of greater than 0.05 to the heritability of drinks per week, estimates more than ten times their standard errors (Liu et al., 2019).This heritability contributed by common variants is sometimes called “SNP heritability,” and T&G disparage it for the alleged “disadvantage of being substantially smaller” than “twin and family heritabilities.” Nowhere do T&G consider what the precise numbers actually mean—an approach that can be hazardous to your scientific health, as the late John Loehlin might have said. Let us, then, consider these numbers. Under a model of pure neutrality, SNP and pedigree narrow-sense heritabilities should be fairly close, essentially as a result of factors p(1 − p) canceling in the multiplication of the numbers of SNPs to be found at a given allele frequency by the average heritability contributed per SNP (Hill, 2010). If SNP and pedigree heritabilities are not close, then natural selection must have been acting on [End Page 441] the trait, preventing new mutations of large effect from becoming common and thereby concentrating heritability at allele frequencies lower than those typically studied in genome-wide association studies (GWAS). This deduction has been abundantly confirmed: the tendency of GWAS SNPs to reside in evolutionarily conserved regions (Finucane et al., 2015; Kim et al., 2019), the younger age of GWAS SNPs when compared to control SNPs of comparable frequencies (Gazal et al., 2017), the discovery of several rare variants with larger effects than those observed in typical GWAS (Barton et al., 2021; Chen et al., 2023; Marouli et al., 2017), the directly measured deleterious fitness effects of mutations in evolutionarily constrained genes (Gardner et al., 2022), and the substantial additional genetic variance accumulated when rare variants are included in GCTA-type studies, sometimes enough to close the gap between SNP and pedigree heritabilities (Evans et al., 2018; Jang et al., 2022; Pathan et al., 2024; Wainschtein et al., 2022).The genetic architecture of a typical quantitative trait consists of many sites across the genome that can mutate to affect it, numbering potentially in the millions (Agarwala et al., 2013; Zeng et al., 2021), of which those that are common SNPs have very small effects as a result of selection. This is the message, but T&G seem to find fault with the messenger, painting “tiny” effect sizes as an embarrassment to the field of behavioral genetics as a whole. We prefer to view the finding of high polygenicity as a revelation about nature, rather than as a debating point. What is this finding telling us? If one takes the action of stabilizing selection as the initial assumption (Uyeda et al., 2011), then the extreme polygenicity revealed by GWAS becomes part of the answer to the question regarding how traits can... (shrink)

ABSTRACT The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient‐centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing (...) for Huntington's disease (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal ‘depth of field’. We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics. (shrink)

As a clinical geneticist I have been amazed at the speed of discovery over the past 20 years. The specific genetic causes of thousands of rare genetic conditions have been defined due to improvements in genomic sequencing, computing power and international collaborations to phenotype individuals with similar clinical features. This knowledge has resulted in an increased ability to make accurate molecular diagnoses which informs optimal treatment and clinical care, can remove the need for unnecessary investigations and informs reproductive (...) decision-making. However for any given individual, this genetic testing can often take weeks or months before the initial genetic diagnosis is made within a family. Occasionally genetic information is required more quickly to define a clinical action. For years point of care testing (POCT) has been a mainstay of clinical care, for example, in confirming pregnancy or monitoring blood glucose. I had been keen to explore scenarios where a genetic POCT could be employed in clinical practice. To me, an obvious example appeared to be neonatal testing to avoid gentamicin-induced hearing loss. Here was a situation where we had known about the genetic …. (shrink)

As our scientific and technical abilities expand at breathtaking speeds, concern that modern genetics and bioengineering are leading us to a posthuman future is growing. Is Human Nature Obsolete? poses the overarching question of what it is to be human against the background of these current advances in biotechnology. Its perspective is philosophical and interdisciplinary rather than technical; the focus is on questions of fundamental ontological importance rather than the specifics of medical or scientific practice.The authors -- all distinguished scholars (...) in their fields -- take on questions about technology's goals and values that are often ignored or sidelined in the face of rapid scientific advances and the highly specialized nature of technical knowledge. The essays included represent a rich variety of thought, ranging from finely nuanced philosophical and theological arguments to historical studies and cultural commentaries. Several explore the historical background of today's biotechnology: Timothy Casey traces such developments as the emergence of cybernetic humanity from Cartesian dualism, and Diane Paul presents the history of "positive" versus coerced eugenics. Jean Bethke Elshtain discusses cloning as a "messianic project" to perfect the body and exclude natural diversity -- giving as an example the elimination of Down Syndrome as an acceptable human type -- while Harold Baillie calls for an examination of the metaphysical roots of personhood. Robert Proctor finds no evidence in paleontology for any "essence of humanity," and Tom Shannon argues against materialist reductionism. Addressing social concerns, Lisa Sowle Cahill finds the possibility of a political solution to the problems raised by genetic engineering in Catholic teachings on social justice, and Langdon Winner looks critically at the "scientific enthusiasts of a posthuman future." Taken as a whole, the book provides a humanistic overview of a subject too often considered only in its technological aspect. (shrink)

Post-Dobbs abortion restrictions impact access and choice in the context of reproductive genetic medicine, raising serious reproductive justice concerns. The consequences of these restrictions are particularly acute and far-reaching for individuals with genetic conditions and their families.

The prelims comprise: Introduction Pre‐existing Conditions Case Model of Causation Case study of ‘Genetic Disease” The Future of Medical Insurance Conclusion Notes References Suggestions for Further Reading.

Recognizing that all traits are the result of an interaction between genes and environment, I offer a set of criteria for nevertheless making sense of our practice of singling out certain traits as genetic ones, in effect making a distinction between causes and mere conditions. The central criterion is that a trait is genetic if it is genetic differences that make the differences in that trait variable in a given population. A second criterion requires that genetic (...) traits be individuated in a way that matches what some genetic factors cause specifically. Clarifying our causal and classificatory language here can help us to avoid confusions of both theoretical and practical significance. (shrink)

BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family (...) communication may also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)

Within the medical, legal and bioethical literature, there has been an increasing concern that the information derived from genetic tests may be used to unfairly discriminate against individuals seeking various kinds of insurance; particularly health and life insurance. Consumer groups, the general public and those with genetic conditions have also expressed these concerns, specifically in the context of life insurance. While it is true that all insurance companies may have an interest in the information obtained from genetic (...) tests, life insurers potentially have a very strong incentive to (want to) use genetic information to rate applicants, as individuals generally purchase their own cover and may want to take out very large policies. This paper critically focuses on genetic information in the context of life insurance. We consider whether genetic information differs in any relevant way from other kinds of non-genetic information required by and disclosed to life insurance companies by potential clients. We will argue that genetic information should not be treated any differently from other types of health information already collected from those wishing to purchase life insurance cover. (shrink)

The prelims comprise: Introduction: Informed Consent and the Doctor‐Patient Relationship The Role of Children in the Informed Consent Process Newborn Screening: Mandatory Screening versus Informed Consent Testing Young Children for Early‐onset Genetic Conditions Testing Children for Late‐onset Genetic Conditions Testing Children for Carrier Status Conclusion Acknowledgments.

This open peer commentary critically examines the concept of unqualified medical confidentiality in the context of clinical genetics. The authors challenge two key assertions about maintaining absolute confidentiality: first, that preventing information sharing is the most effective way to minimize harm, and second, that individuals will take more responsibility for their health under strict confidentiality. Using a case study of a genetic condition with familial implications, they argue for a "qualified confidentiality" approach specific to clinical genetics. The commentary (...) highlights the unique nature of genetic information, which often has direct implications for family members. The authors suggest that in certain medical contexts, particularly those involving inheritable conditions, a more nuanced approach to confidentiality might better protect the health interests of multiple individuals, balancing patient privacy with potential preventative benefits for at-risk family members. (shrink)

The rapid advances made in genetic research and technology over the last few decades have led to a host of important discoveries that have allowed for the detection (and hopefully soon the treatment) of a number of genetic conditions and diseases. Not surprisingly, these advances have also raised numerous ethical concerns about how result­ ing technologies will be implemented, and the impact they will have on different com­ munities. One particular concern is the enormous costs involved in conducting (...) genetic research and the fact that the private sector has become heavily involved; the desire to commercialize the results and technology derived from genetic research is considered problematic. In September 1998, the Second International Conference on DNA Sampling, titled "The Commercialization of Genetic Research: Ethical, Legal and Policy Issues," was held of the conference, and of this book, was to in Edmonton, Alberta, Canada. The goal facilitate an interdisciplinary discussion of the legal, ethical, and policy implications arising from the commercialization of genetic research. We solicited contributions for the book from authors in fields as diverse as ethics, law, medicine, health policy, and the social sciences. The papers included, while based on presentations given at the conference, have been substantially expanded and enhanced by the commentary received and discussions held at the conference. (shrink)

Since 1991, over half the states have enacted laws that restrict or prohibit insurers’ use of genetic information in pricing, issuing, or structuring health insurance. Wisconsin was the first state to do so, in 1991, followed by Ohio in 1993, California and Colorado in 1994, and then several more states a year in each of the next five years. Similar legislation has been pending in Congress for several years. Also, a 1996 federal law known as the Health Insurance Portability (...) and Accountability Act prohibits group health insurers from applying “preexisting condition” exclusions to genetic conditions that are indicated solely by genetic tests and not by any actual symptoms. (shrink)

Talk of a “genetic program” has become almost as common in cell and evolutionary biology as talk of “genetic information”. But what is a genetic program? I understand the claim that an organism’s genome contains a program to mean that its genes not only carry information about which proteins to make, but also about the conditions in which to make them. I argue that the program description, while accurate in some respects, is ultimately misleading and should be (...) abandoned. After that, I sketch an alternative framework which is better suited to capturing the full informational nature of genes. This framework is centered on the notion of a signaling game, as originally developed by David Lewis, but expanded upon considerably by Brian Skyrms in more recent years. On the view I develop, genes turn out to be the producers and consumers of regulatory or developmental information, rather than entities encoding such information. This finding has consequences that link up with a broader debate in the philosophy of biology concerning inheritance systems. I take this to be one form of theoretical payoff that results from applying the signaling games framework to genes. (shrink)

The argument is put forward that genetic mutations are viable then only, when the changed pattern of growth and/or metabolism is accommodated by the taxon-specific biochemistry of the organisms, i.e. by adaptive, somatic/physiological plasticity. The range of somatic plasticity under changing environmental conditions, therefore, has a certain predictive value for the kind of mutations that are likely to be viable.

Over the next 15 years, the government-funded human genome project will map and sequence each of the human cell’s estimated 100,000 genes. The project’s first fruits will be a vast quantity of information about genetic disease. This information will contribute to the design of quicker, cheaper and more accurate tests for identifying deleterious genes in individuals. Because genetic conditions are often regarded as “immutable, heritable taints that intrinsically implicate the bearer’s identity,” overly-deterministic interpretations of genetic information can (...) readily distort genetic risk and become enshrined in institutional policies of social isolation and discrimination. (shrink)

New genetic technologies and their applications in biomedicine have important implications for social identities in contemporary societies. In medicine, new genetics is increasingly important for the identification of health and disease, the imputation of personal and familial risk, and the moral status of those identified as having genetic susceptibility for inherited conditions. There are also consequent transformations in national and ethnic collective identity, and the body and its investigation is potentially transformed by the possibilities of genetic investigations (...) and modifications (including the highly controversial terrains of reproductive technologies and the use of human embryos in biomedical research). The papers in this volume, drawn from an international array of authors, address these issues from a variety of national, disciplinary and empirical standpoints. An informative read for postgraduates and professionals in the fields of sociology, social anthropology, science and technology studies, and environmental studies, the chapters comprise empirically based and theoretically informed discussions of key sociological, anthropological, political and ethical issues. Using the resources of a wide range of social science disciplines to provide a comparative approach to complex issues, this superb collection explores the local and global consequences of the new genetics, and analyzes the social implications of these advances for identity formation in a period of rapid social change. (shrink)

: The accelerated discovery of gene mutations that lead to increased risk of disease has led to the rapid development of predictive genetic tests. These tests improve the accuracy of assigning risk, but at a time when intervention or prevention strategies are largely unproved. In coming years, however, data will become increasingly available to guide treatment of genetic diseases. Eventually genetic testing will be performed for common diseases as well as for rare genetic conditions. This will (...) challenge genetic counseling practice. The ethical principles that now guide this practice take into account the personal nature of test decision making, the need to respect individual self-determination, and the importance of client confidentiality. Certain of these principles may have to be modified as genetic testing becomes more widespread in order to meet the changing needs of clients and society. This paper offers recommendations to ensure that genetic counselors will take a leading role in the future delivery of ethical genetic services. (shrink)

Reproductive genetic carrier screening is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention-focused public health ethics approach to such screening programs. Rejecting the prevention paradigm in this context has led to an emphasis on more individually-focused values of freedom of choice and fostering reproductive autonomy in RCS. We argue, however, that population-wide RCS has (...) sufficient features in common with other public health screening programs that it becomes important also to attend to its public health implications. Not doing so constitutes a failure to address the social conditions that significantly affect people’s capacity to exercise their reproductive autonomy. We discuss how a public health ethics approach to RCS is broader in focus than prevention. We also show that additional values inherent to ethical public health—such as equity and solidarity—are essential to underpin and inform the aims and implementation of reproductive carrier screening programs. (shrink)

Ethical questions about confidentiality arise when patients refuse to inform relatives who are at risk of a genetic condition. Specifically, healthcare providers may struggle with the permissibility of breaching confidentiality to warn patients’ at-risk relatives. In exploring this issue, several authors have converged around the idea that genetic cases differ from non-genetic cases (e.g., involving a threat of violence or the spread of an infectious disease) along two related dimensions: (1) In genetic cases, the risk (...) of harm is already present in an at-risk third party, whereas in non-genetic cases, it is not; and (2) In genetic cases, the patient does not create a risk of harm to a third party, whereas in non-genetic cases, the patient does. I argue that these distinctions do not exclusively differentiate genetic from non-genetic cases and should not bear on the permissibility of breaching confidentiality. Instead, such determinations should be based on other considerations. (shrink)

Genetic mosaicism has long been linked to aging, and several hypotheses have been proposed to explain the potential connections between mosaicism and susceptibility to cancer. It has been proposed that mosaicism may disrupt tissue homeostasis by affecting intercellular communications and releasing microenvironmental constraints within tissues. The underlying mechanisms driving these tissue‐level influences remain unidentified, however. Here, we present an evolutionary perspective on the interplay between mosaicism and cancer, suggesting that the tissue‐level impacts of genetic mosaicism can be attributed (...) to Indirect Genetic Effects (IGEs). IGEs can increase the level of cellular stochasticity and phenotypic instability among adjacent cells, thereby elevating the risk of cancer development within the tissue. Moreover, as cells experience phenotypic changes in response to challenging microenvironmental conditions, these changes can initiate a cascade of nongenetic alterations, referred to as Indirect non‐Genetic Effects (InGEs), which in turn catalyze IGEs among surrounding cells. We argue that incorporating both InGEs and IGEs into our understanding of the process of oncogenic transformation could trigger a major paradigm shift in cancer research with far‐reaching implications for practical applications. (shrink)

It has been argued by some authors that our reaction to deaf parents who choose deafness for their children ought to be compassion, not condemnation. Although I agree with the reasoning proposed I suggest that this practice could be regarded as unethical. In this article, I shall use the term “dysgenic” as a culturally imposed genetic selection not to achieve any improvement of the human person but to select genetic traits that are commonly accepted as a disabling (...) class='Hi'>condition by the majority of the social matrix; in short as a handicap. As in eugenics, dysgenics can be achieved in a positive and a negative way. Positive dysgenics intends to increase the overall number of people with a particular genetic trait. Marriage between deaf people or conceiving deaf children through reproductive technology are examples of positive dysgenics. Negative dysgenics can be obtained through careful prenatal or pre-implantation selection and abortion (or discarding) of normal embryos and foetuses. Only deaf children would be allowed to live. If dysgenics is seen as a programmed genetic intervention that undesirably shapes the human condition – like deliberately creating deaf or dwarf people – the professionals involved in reproductive technologies should answer the question if this should be an accepted ethical practice because the basic human right to an open future is violated. (shrink)

I note with interest the Controversy regarding a baby born free of an inherited predisposition to early onset Alzheimer’s disease through the use of preimplantation genetic diagnosis .1,2 As the medical geneticist for the PGD programme for single gene disorders in Melbourne, Australia, I have seen many couples who have considered PGD for a wide range of genetic conditions. My observation is that many couples look to PGD for “milder” conditions and adult onset conditions for which they are (...) not comfortable to have traditional prenatal diagnosis and termination of pregnancy.An example of this is that in the last 11 years our unit has undertaken 13 prenatal diagnoses for Huntington’s disease from nine couples, whereas in the two years that we have been offering it we have had six requests for PGD for Huntington’s disease and three couples …. (shrink)

The science of genetics is undergoing a paradigm shift. Recent discoveries, including the activity of retrotransposons, the extent of copy number variations, somatic and chromosomal mosaicism, and the nature of the epigenome as a regulator of DNA expressivity, are challenging a series of dogmas concerning the nature of the genome and the relationship between genotype and phenotype. According to three widely held dogmas, DNA is the unchanging template of heredity, is identical in all the cells and tissues of the body, (...) and is the sole agent of inheritance. Rather than being an unchanging template, DNA appears subject to a good deal of environmentally induced change. Instead of identical DNA in all the cells of the body, somatic mosaicism appears to be the normal human condition. And DNA can no longer be considered the sole agent of inheritance. We now know that the epigenome, which regulates gene expressivity, can be inherited via the germline. These developments are particularly significant for behavior genetics for at least three reasons: First, epigenetic regulation, DNA variability, and somatic mosaicism appear to be particularly prevalent in the human brain and probably are involved in much of human behavior; second, they have important implications for the validity of heritability and gene association studies, the methodologies that largely define the discipline of behavior genetics; and third, they appear to play a critical role in development during the perinatal period and, in particular, in enabling phenotypic plasticity in offspring. I examine one of the central claims to emerge from the use of heritability studies in the behavioral sciences, the principle of minimal shared maternal effects, in light of the growing awareness that the maternal perinatal environment is a critical venue for the exercise of adaptive phenotypic plasticity. This consideration has important implications for both developmental and evolutionary biology. (shrink)

Under conditions with a low level of available genetic information, mutualistic private insurance markets will often create broadly just outcomes, even if by accident rather than by design. Normatively acceptable outcomes of this kind would come under threat if insurers were to have increased access to genetic information with substantial predictive content.1 As the availability of relevant individual genetic information grows, mutualistic forms of market-based insurance face a dilemma between either sacrificing individuals’ interests in genetic privacy, (...) or creating conditions for market failure due to adverse selection. My view is therefore that we have good reason to shift towards more solidaristic forms of ‘risk-sharing institutions’ with regard to functions such as life insurance and critical illness insurance, as a way of resolving normative tensions between values of equality, privacy, non-discrimination and autonomy. Such a position, I have argued, does not depend on endorsing any particular conception of social justice, but can be defended on the basis of a number of different plausible accounts of what justice demands.1 Jonathan Pugh argues against my endorsement of a shift towards solidaristic, non-market risk-sharing institutions, and instead argues broadly in favour of the status quo. He holds that it counts against my proposals that they ‘have wide-ranging and highly revisionary implications’, and argues that my approach is mistaken in relying on ‘a single contestable theory’. Pugh offers a purportedly less contestable account of the relevant normative considerations underlying insurance regimes, composed of three …. (shrink)

Book reviewed in this article: Coping with Genetic Disorders. By John C. Fletcher. Genetics, Ethics and Parenthood. Edited by Karen Lebacqz. Screening and Counseling for Genetic Conditions: The Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs. A report of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.

Reproductive genetic carrier screening provides information about people's chance of having children with certain genetic conditions. Severity of genetic conditions is an important criterion for their inclusion in carrier screening programmes. However, the concept of severity is conceptually complex and underspecified. We analyse why severity is an important concept in carrier screening and for reproductive decision-making and show that assessments of severity can also have normative societal implications. While some genetic conditions are unambiguously associated with a (...) high degree of suffering, there are many factors that contribute to how severe a condition is perceived to be, and perspectives will vary. Attempts to classify genetic conditions according to their severity tend to prioritise biomedical information at the expense of incorporating qualitative aspects of the impact of genetic conditions on people's lives. Further complexity arises because some genotypes can present with variable phenotypes and because some conditions are not always experienced in the same way by all people who have them. To acknowledge this complexity, we argue that an understanding of severity needs to distinguish between the severity of a genetic condition—requiring a generalised approach for purposes of policy development and programme design—and the severity of an instance of a genetic condition in a particular person. Families making reproductive decisions also require access to diverse experiences of the qualitative aspects of living with genetic conditions. As a result, reproductive carrier screening programmes must recognise and respond to the complexity inherent in determining the severity of genetic conditions. (shrink)

Madole & Harden describe how genetics can be used in a causal framework. We agree with many of their opinions but argue that comparing within-family designs to experiments is unnecessary and that the proposed influence of genetics on behavior can be better described as inus conditions.

Authors such as Francis Fukuyama, the President's Council on Bioethics, and George Annas have argued that biotechnological interventions that aim to promote genetic enhancement pose a threat to human nature. This paper clarifies what conclusions these critics seek to establish, and then shows that there is no plausible account of human nature that will meet the conditions necessary to support this position. Appeals to human nature cannot establish a prohibition against the pursuit of genetic enhancement.

The surge in genetic research and technology, fuelled in large part by the Human Genome Project, has resulted in the continuing expansion of the range of genetic tests and other genetic information available to physicians, insurance companies, employers, and the general public.’ Genetic tests can provide presymptomatic medical information about an individual, including information about an individual's increased risk of future disease, disability, or early death. These tests can reveal information about an individual's carrier status, that (...) is, the likelihood of parents passing on to their children a genetic condition, and about the health of the individual's family members. Although genetic information provides the promise of early detection and treatment of certain illnesses and disorders, it also poses risks. As a result of the increase in genetic testing and information, legal issues regarding employment discrimination on the basis of genetic information are emerging. (shrink)

Prenatal genetic testing is becoming available for an increasingly broad set of diseases, and it is only a matter of time before parents can choose to test for hundreds, if not thousands, of genetic conditions in their fetuses. Should access to certain kinds of fetal genetic information be limited, and if so, on what basis? We evaluate a range of considerations including reproductive autonomy, parental rights, disability rights, and the rights and interests of the fetus as a (...) potential future child. We conclude that parents should be able to access information that could be useful during pregnancy, but that testing for non-medical information should be limited. Next, we argue that the government lacks a compelling state interest in regulating prenatal genetic testing and propose that regulation should occur through medical professional organizations. Finally, we present a framework for determining what testing physicians should recommend, offer neutrally, or not offer at all. (shrink)

Genetic engineering technologies are a subclass of the biotechnology family, and are concerned with the use of laboratory-based technologies to intervene with a given organism at the genetic level, i.e., the level of its DNA. This class of technologies could feasibly be used to treat diseases and disabilities, create disease-resistant crops, or even be used to enhance humans to make them more resistant to certain environmental conditions. However, both therapeutic and enhancement applications of genetic engineering raise serious (...) ethical concerns. This paper examines various objections to genetic engineering (as applied to humans) which have been raised in the literature, and presents a new way to frame these issues, and to look for solutions. Specifically, this paper frames genetic engineering technologies within the ‘design turn in applied ethics’ lens and thus situates these technologies as covarying with societal forces. The value sensitive design (VSD) approach to technology design is then appropriated as the conceptual framework in which genetic engineering technologies can be considered so that they can be designed for important human values. By doing so, this paper brings further nuance to the scholarship on genetic engineering technologies by discussing the sociotechnicity of genetic engineering systems rather than framing them as value-neutral tools that either support or constrain values based on how they are used. (shrink)