This chapter provides a philosophical overview of different approaches to age and aging. I challenge the belief that our age is always determined by the amount of time we have existed: chronology. I propose there are different views on age and aging. Biological age, which can be estimated based on epigenetics, might be more useful and important concept than chronological age. I suggest that sometimes some people should be allowed to change their legal age to reduce the harms that come (...) from unjust assumptions related to old age. Changing legal age could also be used to fight ageism, discrimination based on age. (shrink)

Professor Röbbe Wünschiers, a lecturer at the University of Applied Sciences Mittweida, Germany, offers a nuanced and comprehensive perspective on the intersection of genomics and society in his bo...

In much the same way that genomic technologies are changing the complexion of biomedical research, the issues they generate are changing the agenda of IRBs and research ethics. Many of the biggest challenges facing traditional research ethics today — privacy and confidentiality of research subjects; ownership, control, and sharing of research data; return of results and incidental findings; the relevance of group interests and harms; the scope of informed consent; and the relative importance of the therapeutic misconception — have become (...) important policy issues over the last 20 years because of the ways they have been magnified by genomic research efforts. Research that examines the ethical, legal, and social implications of human genomics research has become a burgeoning international field of scholarship over the last 20 years, thanks in part to its support first by the genome research funding bodies in the U.S. and then by national science agencies in other countries. (shrink)

Genomics, Populations, and Society, a new volume in the Genomic and Precision Medicine in Clinical Practice series, considers the vast and thorny web of ELSI topics in genomics, from bioethics to healthcare applications, healthcare economics, genomic data management, and population dynamics. Emphasis is placed on the impact of rapid genomic advances on ethical, sociocultural and lifestyle dimensions. Healthcare and health economics topics include genomics and digital health, genome editing, and genomics and infectious disease management. Legal (...) issues related to data ownership, equity, access, probity, consent, and confidentiality are also discussed in-depth, along with sociocultural topics such as community engagement, consanguinity, and more. Here, a range of readers from researchers to clinicians, policy administrators, lawyers, economists and social scientists will discover carefully crafted, synthesized discussions on ELSI topics in genomics to power new scientific advances and genomic medicine implementation. (shrink)

In 1990 the Human Genome Project (HGP) was launched as an important historical marker, a pivotal contribution to the time-old quest for human self-knowledge. However, when in 2001 two major publications heralded its completion, it seemed difficult to make out how the desire for self-knowledge had really been furthered by this endeavor (IHGSC 2001; Venter et al. 2001). In various ways mankind seems to stand out from other organisms as a unique type of living entity, developing a critical perspective on (...) its own behavior and consciously engaged in building a complex society of its own making—and therefore increasingly able to determine the conditions of its own evolution. However, this uniqueness is not easily and .. (shrink)

How may emergent biotechnologies impact upon our relations with other animals? To what extent are any changes indicative of new relations between society and nature? This paper critically explores which sociological tools can contribute to an understanding of the technologisation of animal bodies. By drawing upon interview data with animal scientists I argue that such technologies are being partly shaped by broader changes in agriculture. The complexity of genomics trajectories in animal science is partly fashioned through the deligitimisation (...) of the productivist paradigm but continue to sit in tension around particular conceptions of sustainability in farm animal production.In spite of this deligitimisation process genomics is now being framed in the context of a new productivism (termed the livestock revolution) bound up in projected global changes in animal consumption during the first half of the 21st century. This potentially jars against both social trends that seek to re-enchant animal life and sustainability discourses which include social and environmental contexts. Nevertheless the possibility of a new productivism is supported by various interconnected trends including the emergence of a discourse of the 'bioeconomy' and a liberal regulatory apparatus for farm animal breeding technologies. Ultimately an understanding of the possibility of emerging new bio-capitalisations on animal life should be set in a broader context of competing agricultural paradigms as well as ongoing tensions over 'naturalness' in human/animal relations. (shrink)

In discussions on genetic engineering and plant breeding, the intrinsic value of plants and crops is used as an argument against this technology. This paper focuses on the new field of plant genomics, which, according to some, is almost the same as genetic engineering. This raises the question whether the intrinsic value of plants could also be used as an argument against plant genomics. We will discuss three reasons why plant genomics could violate the intrinsic value of (...) plants: 1. genomics is part of biotechnology; 2. genomics equals genetic engineering; 3. plant genomics may enhance trends that lead to the instrumentalization of plants. We will conclude that in the biotic view the intrinsic value of plants is violated by plant genomics only in case of 'the genomics equals genetic engineering scenario'. (shrink)

Adverse developmental exposures and pathologies of the social environment make vastly greater contributions to the leading health burdens in society than currently known genotypic information. Yet, while patients now commonly bring information on single alleles to the attention of their healthcare team, the former conditions are only rarely considered with respect to future health outcomes. This manuscript aims to integrate social environmental influences in genetic predictive models of disease risk. Healthcare providers must be educated to better understand genetic risks (...) for complex diseases and the specific health consequences of societal adversities, to facilitate patient education, disease prevention, and the optimal care in order to achieve positive health outcomes for those with early trauma or other social disadvantage. (shrink)

This article assesses the potential impact of current genomics research on human rights against the backdrop of the eugenics movement in the English-speaking world during first third of the twentieth century, The echo of eugenic interventions in societies far beyond Nazi Germany reverberates in the ethical debates triggered by the potential inherent in recent molecular biological developments. Mandatory eugenic restrictions of reproductive freedom seem less likely in countries committed to civil liberties than under authoritarian governments. More likely, consumer choice (...) might sustain a trend towards voluntary “improvement” of biological inheritance in the future. However, the increasing availability of genetic information and the patenting of human genes may lead, respectively, to a loss of reproductive autonomy and a reduction in equitable access to medical care; hence new regulations and/or legislation may be required to ensure appropriate control over genetic information and use of intellectual property rights in human genes. (shrink)

Analysis of a European Union funded biotechnology project on plant genomics and marker assisted selection in Solanaceous crops shows that the organization of a dialogue between science and society to accompany technological innovations in plant breeding faces practical challenges. Semi-structured interviews with project participants and a survey among representatives of consumer and other non-governmental organizations show that the professed commitment to dialogue on science and biotechnology is rather shallow and has had limited application for all involved. Ultimately, other (...) priorities tend to prevail because of high workload. The paper recommends including results from previous debates and input from societal groups in the research design phase (prior to communication), to use appropriate media to disseminate information and to make explicit how societal feedback is used in research, in order to facilitate true dialogue between science and society on biotechnology. (shrink)

Analysis of a European Union funded biotechnology project on plant genomics and marker assisted selection in Solanaceous crops shows that the organization of a dialogue between science and society to accompany technological innovations in plant breeding faces practical challenges. Semi-structured interviews with project participants and a survey among representatives of consumer and other non-governmental organizations show that the professed commitment to dialogue on science and biotechnology is rather shallow and has had limited application for all involved. Ultimately, other (...) priorities tend to prevail because of high workload. The paper recommends including results from previous debates and input from societal groups in the research design phase (prior to communication), to use appropriate media to disseminate information and to make explicit how societal feedback is used in research, in order to facilitate true dialogue between science and society on biotechnology. (shrink)

Is the gene 'special' for historians? What effects, if any, has the notion of the 'gene' had on our understanding of history? Certainly, there is a widespread public and professional perception that genetics and history are or should be in dialogue with each other in some way. But historians and geneticists view history and genetics very differently - and assume very different relationships between them. And public perceptions of genes, genetics, genomics, and indeed the nature and meanings of 'history' (...) differ yet again. Here, in looking at the meaning, and the implications - the significance - of the gene (and its corollary scientific disciplines and approaches) specifically to historians, I will focus on two aspects of the discourse. First, I will examine the ways in which historians have thus far approached genes and genetics, and the impact such studies have had on the field. There is considerable overlap between the subject matter of genetics/genomics and many of the most widely used analytic categories of contemporary historiography - race, gender, sexuality, ethnicity, (dis)ability, among others. Yet the impact of genetics and genomics on society has been studied principally by anthropologists, sociologists and ethicists.2 Only two historical sub-disciplines have engaged with the rise of genetics to any significant degree: the histories of science and of medicine. What does this indicate or suggest? Second, I will explore the impact of the 'gene' and genetic understandings (of, for example, the body, health, disease, identity, the family, and evolution) on public conceptions of history itself. (shrink)

This paper explores the ethics of introducing genome-editing technologies as a new reproductive option. In particular, it focuses on whether genome editing can be considered a morally valuable alternative to preimplantation genetic diagnosis (PGD). Two arguments against the use of genome editing in reproduction are analysed, namely safety concerns and germline modification. These arguments are then contrasted with arguments in favour of genome editing, in particular with the argument of the child’s welfare and the argument of parental reproductive autonomy. In (...) addition to these two arguments, genome editing could be considered as a worthy alternative to PGD as it may not be subjected to some of the moral critiques moved against this technology. Even if these arguments offer sound reasons in favour of introducing genome editing as a new reproductive option, I conclude that these benefits should be balanced against other considerations. More specifically, I maintain that concerns regarding the equality of access to assisted reproduction and the allocation of scarce resources should be addressed prior to the adoption of genome editing as a new reproductive option. (shrink)

Scientists and clinicians are starting to translate genomic discoveries from research labs to the clinical setting. In the process, big data genomic technologies are both a risk to individual privacy and a benefit to personalized medicine. There is an opportunity to address the social and ethical demands of various stakeholders and shape the adoption of diagnostic genome technologies. We discuss ethical and practical issues associated with the networking of genomics by comparing how the European Union and North America understand (...) and practice notions of privacy and consent in research. An overview of international policy suggests the embedding of genomics within digital networks and the Internet creates conditions that challenge the management of privacy and consent in the age of big data. The risks of re-identification, informational harms, and data security vulnerabilities are issues that need to be better addressed in the clinical setting to reconcile the unpredictable pathway of research and practice in the networked information society. (shrink)

This edited collection examines the ethical, legal, social and policy implications of genome editing technologies. Moreover, it offers a broad spectrum of timely legal analysis related to bringing genome editing to the market and making it available to patients, including addressing genome editing technology regulation through procedures for regulatory approval, patent law and competition law. In twelve chapters, this volume offers persuasive arguments for justifying transformative regulatory interventions regarding human genome editing, as well as the various legal venues for introducing (...) necessary or desirable changes needed to create an environment for realizing the potential of genome editing technology for the benefit of patients and society. (shrink)

In the future, the Human Genome Project could eventually open the way to perhaps the determination of the complete wiling diagram of the human brain. This kind of progress may move neuroscience forward into the next level of understanding of human neurophysiology, development and behavior. The next crucial step would be to know, exactly what are the function of this genes, and why its lack or alteration causes a certain disease. Although, genomic has in some way contributed to almost every (...) aspects of neurobiology, the results are both significant and troubling.One of the areas, where HGP will contribute to neuroscience is the mapping of qualitative or complex traits. Complex traits like appearence, intelligence and personality are likely to be affected by hundreds or thousands of different genes, rather than one or a few. On the other hand, the complex organisms are not just the simple result of the sum of their genes, nor do genes alone build the different part of organism or influence behaviour by themselves. In spite of the wide variety of misunderstanding, misinterpretation or possible misusing of these new genetic information, this sort of research may eventually lead to useful practical medical results for humans. This information can contribute to work out therapies to treat learning and memory disorders, neurological disorders like Alzheimer's disease, afflicting more and more people in an increasingly ageing population. Genetics believe, there are 3000 to 4000 hereditary diseases. Gene therapy could one day cure some of them, but only when all the details of their genetic basis are known. Biomedicine in the next century will probably have a completely new role in society based on the beginnings inherent in the HGP.There is a general agreement, that modern neuroscience raises important ethical concerns that not have been adequately addressed either by scientists themselves or by the bioethics community. Some scientists interpreted the rapid progress in neuroscience as additional conformation for a materialist account of human nature, resulting in an attack on traditional belief systems. There is a clear tension between the widely held believes and the intellectual views of many scientists. (shrink)

BackgroundGenetic/genomic testing (GGT) are useful tools for improving health and preventing diseases. Still, since GGT deals with sensitive personal information that could significantly impact a patient’s life or that of their family, it becomes imperative to consider Ethical, Legal and Social Implications (ELSI). Thus, ELSI studies aim to identify and address concerns raised by genomic research that could affect individuals, their family, and society. However, there are quantitative and qualitative discrepancies in the literature to describe the elements that provide (...) content to the ELSI studies and such problems may result in patient misinformation and harmful choices.MethodsWe analyzed the major international documents published by international organizations to specify the parameters that define ELSI and the recognized criteria for GGT, which may prove useful for researchers, health professionals and policymakers. First, we defined the parameters of the ethical, legal and social fields in GGT to avoid ambiguities when using the acronym ELSI. Then, we selected nine documents from 44 relevant publications by international organizations related to genomic medicine.ResultsWe identified 29 ELSI sub-criteria concerning to GGT, which were organized and grouped within 10 minimum criteria: two from the ethical field, four from the legal field and four from the social field. An additional analysis of the number of appearances of these 29 sub-criteria in the analyzed documents allowed us to order them and to determine 7 priority criteria for starting to evaluate and propose national regulations for GGT.ConclusionsWe propose that the ELSI criteria identified herein could serve as a starting point to formulate national regulation on personalized genomic medicine, ensuring consistency with international bioethical requirements. (shrink)

The perspectives of genomic citizen scientists on ownership of research outputs are not well understood, yet they are useful for identifying alignment of participant expectations and project practices and can help guide efforts to develop innovative tools and strategies for managing ownership claims. Here, we report findings from 52 interviews conducted in 2018 and 2019 to understand genomic citizen science stakeholders’ conceptualizations of, experiences with, and preferences for ownership of research outputs. Interviewees identified four approaches for recognizing genomic citizen scientists’ (...) ownership and related credit interests in research outputs: shared governance via commons models; fractional ownership of benefits; full and creative attribution; and offensive and defensive patenting. Interviewees also agreed that the model selected by any project should at least maximize access to research outputs and, as appropriate and to the extent possible, broadly distribute rights of control and entitlements to research benefits. (shrink)

Animals are commonplace in genomic research, yet to date there has been little direct interrogation of the position, role and construction of animals in the otherwise flourishing social science of genomics. Following a brief discussion of this omission, I go on to suggest that there is much of interest for the social sciences and the humanities in this field of science. I show that animal genomics not only updates and extends established debates about the use of animals in (...) science and society, but also raises novel issues and promotes new ways of thinking about what animals are, and the social and biological relationships between animals and humans. Organising the science of interest into six themes (sameness, difference and classification; crossing boundaries; the maintenance of borders; farmyard supermodels; laboratory supermodels; knowing, relating and looking at animals), for each I review some of the science that is being done, some of the conceptual issues that are raised, and some of the social science that is or could be done. I conclude by briefly considering the development of socially responsive policies for animal genomics. (shrink)

This paper identifies several kinds of intellectual mistakes that proponents of genetic engineering make, in defending their views and characterizing the views of their opponents. Results from research in the social sciences and humanities illuminate the nature of these mistakes. The mistakes themselves play a role in allowing proponents to gather support from other protagonists in the social controversies involving science and technology. Understanding the controversies requires understanding that innovations are components of complex and ill-structured social problems; the “right answer” (...) does not follow from scientific or technological breakthroughs. If the problems are identified correctly, issues of non-economic or non-market values and political and individual rights will need to be addressed. (shrink)

The everyday harms of structural racism and discrimination, perpetuated through institutions, laws, policies, and practices, constitute social determinants of health, but measures that account for their debilitating effects are largely missing in genetic studies of complex diseases. Drawing on insights from the social sciences and public health, we propose critical methodologies for incorporating tools that measure structural racism and discrimination within genetic analyses. We illustrate how including these measures may strengthen the accuracy and utility of findings for diverse communities, clarify (...) elusive relationships between genetics and environment in a racialized society, and support greater equity within genomics and precision health research. This approach may also support efforts to build and sustain vital partnerships with communities and with other fields of research inquiry, centering community expertise and lived experiences and drawing on valuable knowledge from practitioners in the social sciences and public health to innovate biomedical and genomic study designs aimed at community health priorities. (shrink)

BackgroundThe return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results.MethodsThis was (...) a qualitative study that employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis.ResultsThe return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent, and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results were perceived as unstandardized due to the lack of appropriate regulatory frameworks.ConclusionsThe return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice. (shrink)

The horse was essential to past human societies but became a recreational animal during the twentieth century as the world became increasingly mechanized. As the author reviews here, recent studies of ancient genomes have revisited the understanding of horse domestication, from the very early stages to the most modern developments. They have uncovered several extinct lineages roaming the far ends of Eurasia some 4000 years ago. They have shown that the domestic horse has been significantly reshaped during the last millennium (...) and experienced a sharp decline in genetic diversity within the last two centuries. At a time when no truly wild horses exist any longer, this calls for enhanced conservation in all endangered populations. These include the Przewalski's horse native to Mongolia, and the many local breeds side‐lined by the modern agenda, but yet representing the living heritage of over five millennia of horse breeding. (shrink)

This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine (...) elements of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both “public” and “engagement.”. (shrink)

As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the (...) debates. Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (shrink)

This paper investigates epistemological and ethical implications of the growingavailability of direct-to-consumer genetic testing for the science and society. Direct-toconsumer genetic testing is characterized as the genetic testing sold directly to consumerswithout any assistance from professionals. By offering empowerment and control, companiesconvince consumers to sequence their genome by granting the company access to theirgenetic data in exchange to results that are not always accurate. To which extent doconsumers properly understand the results of their genetic testing? Are consumers aware ofthe (...) possible implications for disclosing genetic information to private companies? I addressthese questions in two steps: firstly, I discuss epistemological implications of thedevelopment of Genomics, understood as a data-intensive science, by delving into thetheoretical commitments of the concept of gene and the notion of circular causality.Secondly, I reflect upon the privacy risks of taking direct-to-consumer genetic testing in adata-rich world. Finally, I draw some conclusions on the possible consequences of direct-toconsumer genetic testing by suggesting key-concepts that may help to clarify the limits andscope of genetic testing. (shrink)

This is an exploratory paper of the ethical implications for genomic research and mental illness with specific reference to Singapore. Singapore has a unique context due to its social and political systems, and although it is a relatively small country, its population is religiously and culturally diverse. The issues that we identify here, therefore, will offer new perspectives and will also shed light on the existing literature on psychiatric genomics in society. We contextualise issues such as risk and (...) stigma in the identification and diagnosis of psychosis in the way they relate to Singaporean society, and use a current study as a case example. Genomic research has the potential to change significantly he practice of clinical medicine if, as expected, fast and inexpensive sequencing becomes a reality. It will likely also change how society thinks and acts in respect to multi-factorial diseases, conditions, traits, and syndromes that have a genetic component. Genomic research already raises a number of ethical concerns relating to the privacy of individuals, including the disclosure of research results and incidental findings, surreptitious tests, third party access to data, and the re-emergence of genetic determinism. These issues are potentially exacerbated when genomics - the study of whole genomes to understand complex illness and behavioural traits - is applied to psychiatric research, because of the stigma that is often attached to mental illness. In this paper, we discuss some of the issues that have arisen in the context of a study in Singapore that is currently investigating the genomics and biomarkers of psychosis. We argue that although a genomic study rarely creates data that is directly useful to the participant, it can have incidental benefits to the individual who is identified during the study as being at high risk of developing psychosis and its related states. Understanding these potential benefits requires us to examine the implications that this type of research may have on public understandings of genomic data and risk. (shrink)

A new open science culture is emerging within the current system of the life sciences. This culture mixes an ethic of sharing with features such as anti-bureaucracy rebellion, hedonism, search for profit. It is a recombination of an old culture, the Mertonian ethos of modern open science, and a new one: the hacker ethic. This new culture has an important role in the evolving relationship between science and society. And it maintains a political ambivalence. Biohackers are rebel scientists and (...) open access advocates who challenge today’s Big Bio’s concentration of power. But at the same time they live in a new territory of accumulation that never excludes entrepreneurship and profit. (shrink)

This essay discusses the new report, Heritable Human Genome Editing, by the National Academy of Medicine, the National Academy of Sciences, and the Royal Society. After summarizing the report, we argue that the report takes four quite bold steps away from prior reports, namely (1) rejecting an omnibus approach to heritable human genome editing (HHGE) in favor of a case‐by‐case analysis of possible uses of HHGE, accepting that HHGE is acceptable in some cases; (2) recognizing that the interest in (...) having children who are genetically related to both would‐be rearing parents is one that the regulation of HHGE should honor; (3) patterning a regulatory model for HHGE on the United Kingdom's approach to regulating mitochondrial replacement techniques; and (4) conveying skepticism that international regulation is possible while showing a strong preference for a default into national regulatory regimes for HHGE. (shrink)

The Human Genome Project has raised many issues regarding the contributions of genetics to a variety of diseases and societal conditions. With genetic testing now easily conducted with lowered costs in nonmedical domains, a variety of privacy issues must be considered. Such testing will result in the loss of significant privacy rights for the individual. Society must now consider such issues as the ownership of genetic data, confidentiality rights to such information, limits placed on genetic screening, and legislation to (...) control genetic testing and its applications. There is often a conflict between individual rights to privacy and the need for societal protection. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Ethical, Legal, and Social Implications Research Program at the National Human Genome Research InstituteEric M. Meslin (bio), Elizabeth J. Thomson (bio), and Joy T. Boyer (bio)Organizers of the Human Genome Project (HGP) understood from the beginning that the scientific activities of mapping and sequencing the human genome would raise ethical, legal, and social issues that would require careful attention by scientists, health care professionals, government officials, and the (...) public. The establishment of the ELSI (ethical, legal, and social implications) programs at the National Human Genome Research Institute (NHGRI) and the Department of Energy (DOE) was thought to be vital to the success of the HGP in the United States. It also provided a novel approach to the simultaneous study of ethical, legal, and social issues and basic scientific issues. Eric Juengst, the first director of the ELSI program, described its origins in a previous issue of the Kennedy Institute of Ethics Journal (Juengst 1991). Now in its seventh year, the ELSI program has accomplished much. This article summarizes the evolution and goals of the ELSI program at NHGRI, outlines the program’s current research priorities with examples of activities within each priority area, and provides a look to the future, including the initiation of a strategic planning process.Evolution and Goals of the ELSI Research ProgramThe HGP’s “genomic” goals are unique: to map and sequence the entire human genome—some 3 billion base pairs that make up approximately 80–100,000 genes—and the genomes of related model organisms by the year 2005. This goal was particularly ambitious since, when it was proposed, the technologies for mapping and sequencing had yet to be developed. When the HGP was first established, its organizers also elaborated a set of ELSI goals, which they saw as vital to the success of the genome project. The original ELSI goals were: (1) to anticipate and address the implications of the HGP for individuals and society and (2) to examine the ELSI consequences of mapping and sequencing the human genome in order to stimulate public discussion. To meet these goals, the NHGRI created its ELSI research program in 1990. Along with mapping, sequencing, [End Page 291] and mammalian genetics, ELSI was one of four original branches in the NHGRI Division of Extramural Research that funded research in those areas. Although the individual “branches” no longer exist, the mechanisms for funding research remain much the same. While the overall goals of the program have not changed, the specific ways of achieving the goals have continued to evolve. The importance of the ELSI program lies not in the collection of a full set of data that will be valuable in and of itself, but in the value of using and interpreting this new set of information.Early on, the NHGRI described a set of somewhat more specific goals: (1) to develop a program to help understand the ethical, legal, and social implications of the human genome project and (2) to identify and define the major issues of concern and develop policy options to address them. These more specific goals have been largely met. As the most recent biennial NHGRI Progress Report notes, “a robust ELSI research and education program has been established, many of the most urgent ELSI issues have been identified, and many policy options to address these issues have been proposed” (NCHGR 1995, p. 21). Between 1990 and 1996, ELSI provided more than $32.5 million in funding through 128 research and education grants in more than 30 states and in Canada (Table 1). The ELSI research budget is unique in that when originally created, it was specifically tied to the amount of money provided for the overall NHGRI budget. The NHGRI originally devoted 3 percent of its extramural budget to fund ELSI projects, but in FY 1991, it increased the ELSI budget to 5 percent, a figure that remains today. Table 2 lists the expenditures for each fiscal year since 1990 and the cumulative expenditures to date. The ELSI research budget at NHGRI this year will be about $7 million. When other sources of funding—e.g., co-funding arrangements with other institutes and agencies and the funding of ELSI... (shrink)

The field of genetics has seen major advances in recent decades, particularly in research, prevention and diagnosis. One of the most recent developments, the genomic editing technique Clustered regularly interspaced short palindromic repeats (CRISPR)-Cas9, has opened the possibility for genetic therapies through genome modification. The technique marks an improvement on previous procedures but poses some serious ethical conflicts. Bioethics is the discipline geared at finding answers to ethical challenges posed by progress in medicine and biology and examining their repercussions for (...) society. It can also offer a conceptualization of these ethical dilemmas. The aim of this paper is to offer a map of the ethical dilemmas associated with this technique by way of a critical analysis of current literature. The main issues can be grouped in four areas: efficacy and security; the types of cells which can be targeted by the technique (somatic, embryonic and gametes); the goal of the therapy; and accessibility and justice. (shrink)

This paper questions the prevailing historical understanding that scientific racism "retreated" in the 1950s when anthropology adopted the concepts and methods of population genetics and race was recognized to be a social construct and replaced by the concept of population. More accurately, a "populational" concept of race was substituted for a "typological one"-this is demonstrated by looking at the work of Theodosius Dobzhansky circa 1950. The potential for contemporary research in human population genetics to contribute to racism needs to be (...) considered with respect to the ability of the typological-population distinction to arbitrate boundaries between racist society and nonracist, even anti-racist, science. I point out some ethical limits of "population thinking" in doing so. (shrink)

This study considered the range of ethical issues and potential stakeholder priorities associated with the application of genomic technologies applied to animal production systems, in particular those which utilised genomic technologies in accelerated breeding rather than the application of genetic modification. A literature review was used to inform the development of an ethical matrix, which was used to scope the potential perspectives of different agents regarding the acceptability of genomic technologies, as opposed to genetic modification techniques applied to animal production (...) systems. There are very few studies carried out on stakeholder attitudes regarding the application of genomics to animal production in the human food chain and it may be that this technology is perceived as no more than an extension of traditional breeding techniques. While this is an area which needs more research, it would appear from this study that genomics, because it avoids many of the disadvantages and consumer perceptions associated with GM, is likely to prove a more publicly acceptable route than is GM for the development of healthier and more productive animals. However, stakeholders also need to have an approach to the moral status of the animals involved that finds credibility and acceptability with civil society. (shrink)

Although germline editing has been the subject of debate ever since the 1980s, it tended to be based rather on speculative assumptions until April 2015, when CRISPR/Cas9 technology was used to modify human embryos for the first time. This article combines knowledge about the technical and scientific state of the art, economic considerations, the legal framework and aspects of clinical reality. A scenario will be elaborated as a means of identifying key ethical implications of CRISPR/Cas9 genome editing in humans and (...) possible ways of dealing with them. Unlike most other discussions of CRISPR/Cas9 germline editing, which are generally based on deontological arguments, the focus in this case will be on a consequentialistic argument against certain applications of germline and somatic editing that takes not only the potential benefits and risks but also socioeconomic issues into consideration. The practical need for an indication catalogue, guidelines for clinical trials, and for funding of basic research will be pointed out. It will be argued that this need for regulatory action and discussion does not stem primarily from the fact that CRISPR/Cas9 germline editing is revolutionary in terms of its ethical implications and potential for human therapy, although this is the prevailing view in the current discussion. Understanding the value and interest dependency of arguments put forward by different stakeholders and learning from past debates related to similar technologies might prove a fruitful method of reaching judgments and decisions that come closer to a consensus upon which society as a whole can agree - which after all should be the true goal of an ethical debate and of bioethics. (shrink)

Genome editing enables very accurate alterations to DNA. It promises profound and potentially disruptive changes in healthcare, agriculture, industry, and the environment. This paper presents a multidisciplinary analysis of the contemporary development of genome editing and the tension between continuity and change. It draws on the idea that actors involved in innovation are guided by “sociotechnical regimes” composed of practices, institutions, norms, and cultural beliefs. The analysis focuses on how genome editing is emerging in different domains and whether this marks (...) continuity or disruption of the established biotechnology regime. In conclusion, it will be argued that genome editing is best understood as a technology platform that is being powerfully shaped by this existing regime but is starting to disrupt the governance of biotechnology. In the longer term is it set to converge with other powerful technology platforms, which together will fundamentally transform the capacity to engineer life. (shrink)

Genetics today have occupied among sciences the privileged role of physics and chemistry of the beginning of this century. This explosive scientific field influences crucially various disciplines, among them life sciences and informatics. Moreover, it imposes “de facto” dramatic changes to our individual and collective life style, thus influencing the whole framework of our civilisation. The intensive involvement of the global economy in the progress of the research and the dissemination of its applications, arises ethical issues to be arranged.The danger (...) of reappearance of Eugenic ideologies and practices does threaten the contemporary society. Anthropology has to contribute more intensively in the cultivation of a humanistic and moral nurture, necessary for the new framework of principles, efficient for the technological society of the 21st century. (shrink)

This is an exploratory paper of the ethical implications for genomic research and mental illness with specific reference to Singapore. Singapore has a unique context due to its social and political systems, and although it is a relatively small country, its population is religiously and culturally diverse. The issues that we identify here, therefore, will offer new perspectives and will also shed light on the existing literature on psychiatric genomics in society. We contextualise issues such as risk and (...) stigma in the identification and diagnosis of psychosis in the way they relate to Singaporean society, and use a current study as a case example. (shrink)

In addressing the creation and regulation of biobanks in different countries, a short descriptive introduction to the social and cultural backgrounds of each country is mandatory. The State of Israel is relatively young, and can be characterized as a multi-religious, multi-ethnic, multi-cultural society, somewhat similar to the American melting pot. The current population is 8.3 million, a sharp rise resulting from a 1.2 million influx of immigrants from the former Soviet Union in the 1990s. Seventyfive percent are Jewish, 20% (...) Arabs, and several other minorities. The birth rate is 3.8 per family, the highest in the Organization for Economic Cooperation and Development. (shrink)