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Analysis of how papers and databases are handled and interpreted shows that geneticists in Europe must stamp out unethical research practices at home, not just abroad. Analysis of how papers and databases are handled and interpreted shows that geneticists in Europe must stamp out unethical research practices at home, not just abroad., Author(s): Veronika Lipphardt, Mihai Surdu, Nils Ellebrecht, Peter Pfaffelhuber, Matthias Wienroth, Gudrun A. Rappold Author Affiliations: Europe's Roma people are vulnerable to poor practice in genetics A Roma woman on [...]

My approach to human genetic engineering draws on 10 years of research on the social impact and meaning of emerging biotechnologies, in particular regenerative medicine and genomics, in which I [...]

Autism spectrum disorder (ASD) is being identified in an ever-increasing number of countries, including many that are low or middle income (LMIC). Research conducted in these countries requires awareness of unique ethical issues. Drawing on the experience of two organizations that have been involved in conducting and collaborating in ASD research in India, we describe specific considerations in conducting epidemiological, genetic and treatment studies as well as general principles from the field of multinational clinical research as they apply to the conduct of ASD research. We argue that greater attention to ethical concerns will result in quality studies conducted in LMICs that are also of greatest relevance for families and children with ASD. Keywords Autism spectrum disorder * Ethics * Cross-cultural * ELSI * LMIC * LAMI * Global * India, Given the rapid spread of awareness about autism spectrum disorder (ASD) around the world, the condition is being identified, and research on ASD is being conducted, in an ever-increasing number [...]

This essay investigates the Australian Law Reform Commission's (ALRC) use of the fictional film GATTACA in the policy brief, 'Essentially Yours,' as a rhetorical commonplace to frame various ethical, legal, and scientific issues related to genetic technologies. Because emerging genetic therapy technologies invite both fear and fascination, the ALRC faces the rhetorical challenge of maintaining a distinction between genetic science and its fictional representations. I argue that their use of GATTACA expands the rhetorical landscape by allowing argument forms traditionally absent from scientific discourses. 'Essentially Yours' employs GATTACA to illuminate social, legal, and ethical considerations that both challenge deterministic discourses and to promote the value of genetic science. This expansion of the rhetorical landscape identifies new avenues for scientists and nonscientists to converse about the ethical and social dimensions of science policy even as explicit scientific knowledge remains elusive to nonscientific audiences. DOI: 10.1080/10417940902896839

The Genetic Virtue Project (GVP) is a proposed interdisciplinary effort between philosophers, psychologists and geneticists to discover and enhance human ethics using biotechnology genetic correlates of virtuous behavior. The empirical plausibility that virtues have biological correlates is based on the claims that (a) virtues are a subset of personality, specifically, personality traits conceived of as 'enduring behaviors,' and (b) that there is ample evidence that personality traits have a genetic basis. The moral necessity to use the GVP for moral enhancement is based on the claims that we should eliminate evil (as understood generically, not religiously), as some evil is a function of human nature. The GVP is defended against several ethical and political criticisms. Key words: Virtue, moral enhancement, genetic engineering, pre-implantation genetic diagnosis doi: 10.2990/28_2_27

Making sense of rapidly evolving evidence on genetic associations is crucial to making genuine advances in human genomics and the eventual integration of this information in the practice of medicine and public health. Assessment of the strengths and weaknesses of this evidence, and hence the ability to synthesize it, has been limited by inadequate reporting of results. The STrengthening the REporting of Genetic Association studies (STREGA) initiative builds on the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Statement and provides additions to 12 of the 22 items on the STROBE checklist. The additions concern population stratification, genotyping errors, modelling haplotype variation, Hardy-Weinberg equilibrium, replication, selection of participants, rationale for choice of genes and variants, treatment effects in studying quantitative traits, statistical methods, relatedness, reporting of descriptive and outcome data, and the volume of data issues that are important to consider in genetic association studies. The STREGA recommendations do not prescribe or dictate how a genetic association study should be designed but seek to enhance the transparency of its reporting, regardless of choices made during design, conduct, or analysis., The rapidly evolving evidence on genetic associations is crucial to integrating human genomics into the practice of medicine and public health [1,2]. Genetic factors are likely to affect the occurrence [...]

Strategies for protecting historically disadvantaged groups have been extensively debated in the context of genetic variation research, making this a useful starting point in examining the protection of social groups from harm resulting from biomedical research. We analyze research practices developed in response to concerns about the involvement of indigenous communities in studies of genetic variation and consider their potential application in other contexts. We highlight several conceptual ambiguities and practical challenges associated with the protection of group interests and argue that protectionist strategies developed in the context of genetic research will not be easily adapted to other types of research in which social groups are placed at risk. We suggest that it is this set of conceptual and practical issues that philosophers, ethicists, and others should focus on in their efforts to protect identifiable social groups from harm resulting from biomedical research. Keywords: ethics, biomedical research, group harm, genetics, race, ethnicity, culture

A new analysis of the Best Interests Standard is given and applied to the controversy about testing children for untreatable, severe law-onset genetic diseases, such as Huntington's disease or Alzbeimer's disease. A professional consensus recommends against such predictive testing, because it is not in children's best interest. Critics disagree. The Best Interests Standard can be a powerful way to resolve such disputes. This paper begins by analyzing its meaning into three necessary and jointly sufficient conditions showing it: 1. is an 'umbrella' standard, used differently in different contexts, 2. has objective and subjective features, 3. is more than people's intuitions about how to rank potential benefits and risks in deciding for others but also includes evidence, established rights, duties and thresholds of acceptable care, and 4. can have different professional, medical moral and legal uses, as in this dispute. Using this standard, support is given for the professional consensus based on concerns about discrimination, analogies to adult choices, consistency with clinical judgments for adults, and desires to preserve of an open future for children. Support is also given for parents' legal authority to decide what genetic tests to do. Keywords: Alzheimer's disease, best interest, children, ethics, genetics, Huntington's disease, law, pediatrics, rights

Scientists are turning to genetic variation research in hopes of addressing persistent racial/ethnic disparities in health. Despite ongoing controversy, the advancement of genetic variation research is likely to produce new knowledge and technologies that will substantially change the ways in which we understand and value health. They also may affect the ways in which individuals and groups organize socially, politically, and economically. Addressing concerns that may exist in different communities is vital to the scientific and ethical advancement of genetic variation research. We review empirical studies of public willingness to participate in and opinions about genetic research with particular attention to differences in consent and opinion by racial/ethnic group membership.

Community-based participatory research (CBPR) addresses the social justice dimensions of health disparities by engaging marginalized communities, building capacity for action, and encouraging more egalitarian relationships between researchers and communities. CBPR may challenge institutionalized academic practices and the understandings that inform institutional review board deliberations and, indirectly, prioritize particular kinds of research. We present our attempt to study, as part of a CBPR partnership, cigarette sales practices in an inner-city community. We use critical and communitarian perspectives to examine the implications of the refusal of the university institutional review board (in this case, the University of California, San Francisco) to approve the study. CBPR requires expanding ethical discourse beyond the procedural, principle-based approaches common in biomedical research settings. The current ethics culture of academia may sometimes serve to protect institutional power at the expense of community empowerment.

This paper applies aspects of Hugo Grotius's theologically informed theory of property to contemporary issues concerning access to the human DNA sequence and patenting practices. It argues that Christians who contribute to public debate in these areas might beneficially employ some of the concepts with which he workedunotably 'common right,' the 'right of necessity,' and 'use right.' In the seventeenth century, wars were fought over trading rights and access to the sea. In the twenty-first century, information and intellectual property are the issues of the day. Grotius's writings serve to correct the overemphasis in modern liberalism on individual rights, and have practical application to the debate concerning the reduction of the human genome to the status of private property.

The recent in vitro derivation of gamete-like cells from mouse embryonic stem (mES) cells is a major breakthrough and lays down several challenges, both for the further scientific investigation and for the bioethical and biolegal discourse. We refer here to these cells as gamete-like (sperm-like or oocyte-like, respectively), because at present there is still no evidence that these cells behave fully like bona fide sperm or oocytes, lacking the fundamental proof, i.e. combination with a normally derived gamete of the opposite sex to yield a normal individual. However, the results published so far do show that these cells share some defining features of gametes. We discuss these results in the light of the bioethical and legal questions that are likely to arise would the same process become possible with human embryonic stem (hES) cells.

This paper discusses how the American public accounts for the concerns that they have about genetic research and the benefits that they foresee. We develop a general framework for discussing public claims about genetic technology based on Stephen Toulmin's model of warrants in argumentation. After a review of the results from public opinion polls about genetic research, we present a focus group study of public understandings of genetics. We outline the warrants, or publicly accepted 'good reasons', that this group offers for accepting some aspects of genetic technology and for rejecting other aspects. The warrants presented by the public in their discussion of genetic research indicate that the public has a complex, informed understanding of genetic research, albeit a non-technical one. The paper concludes with a discussion of the importance of public participation in debates over genetic research and the ways that researchers and policymakers could adapt to public concerns about genetics. Keywords: Genetic technology; Public opinion; Warrants; Public understanding of science; USA

Among biomedical scientists, there is a great deal of controversy over the nature of race, the relevance of racial categories for research, and the proper methods of using racial variables. This article argues that researchers and scholars should avoid a binary-type argument, in which the question is whether to use race always or never. Researchers should instead focus on developing standards for when and how to use racial variables. The article then discusses 1 context, criminology, in which the use of racial variables in behavioral genetics research could be particularly problematic. If genetic studies of criminalized behavior use forensic DNA databanks or forensic genetic profiles, they will be confounded by the many racial biases of the law enforcement and penal system.

Dealing primarily with implications rather than foundations, and focusing downstream at the expense of upstream prevention, mainstream bioethics is at a toxic watershed. Through an extended analysis of the Environmental Genome Project (EGP), we offer new tools from the philosophy of science and from critical epidemiology to help bioethics to move ahead. Our aim in this paper is not to resolve the moral and conceptual problems we reveal, but rather to outline ways to prevent such problems from arising in future research.

A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that this demand for informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research.

With the advent of the Human Genome Project and widespread fears over human cloning and medical privacy, a number of states have moved to protect genetic privacy. Oregon's unique Genetic Privacy Act of 1995, which declared that an individual had property rights to their DNA, has provoked national and international interest and controversy. This paper critically reviews the literature on genetic privacy and gene patenting from law, philosophy, science and anthropology. The debate in Oregon, from 1995 to 2001, illustrates many of the key issues in this emerging area. Both sides of the debate invoke the property metaphor, reinforcing deterministic assumptions and avoiding more fundamental questions about the integrity of the body and self-identity. The anthropological critique of the commodification of the body, and the concept of `embodiment' are useful in analyzing the debate over DNA as property. Keywords: Genetic privacy; Embodiment; New genetics; Commodification of the body, Oregon USA

The authors support the use of case-based learning for biology course instruction to emphasize the ethical aspects of genetic research. The method incorporates problem posing, peer persuasion, and problem solving.

Editor's note: This review of The Biotech Century: Harnessing the Gene and Remaking the World, by Jeremy Rifkin, Tarcher/Putnam Publisher; first appeared this Spring in the Economic and Political Weekly [...]

In August of last year, President Bush approved the use of federal funds to support research on a limited number of existing human embryonic stem cell lines. The decision met [...]

A task force created by the Centers for Disease Control and Prevention describes the development of an informed consent form for genetic research. Genetic research can be morally problematic because it can uncover a genetic susceptibility to a disease for which there is no effective treatment.

Byline: Eva M. Neumann-Held (1) Keywords: eugenics; evolutionary gene concept; genetic disease; human genetics; molecular gene concept Abstract: Particularly, but not exclusively, in Germany, concerns are uttered as to the consequences of modern biotechnological advances and their range of applications in the field of human genetics. Whereas the proponents of this research are mainly focussing on the possible knowledge that could be gained by understanding the causes of developmental processes and of disease on the molecular level, the critics fear the beginnings of a new eugenics movement. Without claiming a logical relationship between genetic sciences and eugenics movements, it is nevertheless suggested in this article that a connection between both can become established when the distinction between scientifically validated statements on one hand and guiding hypotheses and assumptions on the other hand is blurred, as is observed particularly when scientists report their results to the public. This claim is demonstrated in comparisons between the current state of scientific knowledge on the role of genes in development and causation of diseases, and the way this is presented to the public. It is required that a debate on biotechnology should include reflections on the validity of claims made by scientists. Author Affiliation: (1) Europaaische Akademie zur Erforschung von Folgenwissenschaftlich-technischer Entwicklungen GmbH, Wilhelmstr. 56, D-53474 Bad, Neuenahr-Ahrweiler, Germany Article History: Registration Date: 08/10/2004 Article note: This revised version was published online in October 2005 with corrections to the Cover Date.

1) The new biogenetic researches, for example cloning, present once again the ticklish question of the relationship between `science and ethics'. What is your opinion about this? And what part, [...]

Should research on the possible genetic components of human intelligence be carried out? I first try to provide some general guidelines as to whether any particular piece of research should be undertaken and then consider the specific example of the ethics of genetic research on intelligence. The history of the debate on intelligence does not make one very optimistic that the fruits of such research would be used wisely. However, there are indications that people's understanding of the nature of inheritance may be improving and it could be that such research might have significant benefits. It is worth remembering than the condition phenylketonuria, a genetic disease in any useful sense of the term, and one that leads to mental retardation (i.e. very low intelligence), is now wholly preventable, and indeed very largely prevented, through environmental intervention.

This article examines the political and ethical factors involved in the Human Genome Diversity Project (HGDP). The author argues that there is a rhetoric of research justification utilized to overshadow the political and ethical issues, and maintains the rhetoric is often very difficult to detect and needs close analysis to keep all implications of research accounted for.

When, less than a half-century ago, James Watson and Francis Crick first revealed to the world the structure of DNA, no one imagined how rapidly genetic technology would develop. Within [...]

The right to genetic knowledge about oneself is self-evident, but in liberal societies, the right to remain in ignorance should be assured if no other person will be harmed. Self-determination and autonomy seem, within liberal traditions, to assure to an individual the right to all knowledge available about himself or herself. Two arguments against the right to ignorance are given: that that harm to others may occur and that that comes from the Kantian perspective, that hurting oneself should not be allowed.

Research on the BRCA1 and BRCA2 genes has helped medical scientists target female populations susceptible to ovarian and breast cancer, but the data are unable to determine conclusively which individuals will actually develop cancer. This raises the ethical issue of whether it is psychologically helpful or harmful to provide this information to women within the risk demographic.

The social significance of the Human Genome Diversity Project (HGDP) is questioned, focusing on the possible negative impact of genetic research. The author argues that funding for the HGDP should resume only after scientists discuss how the program may foster racism, cultural imperialism, and commercialism.

Efforts to put in place programs to restrict reproductive freedom because of some genetic information are neither ethically nor scientifically acceptable. They should be challenged. In some cases the risk of giving birth to an infant with a given disorder can be evaluated. In most pregnancies health and other capacities of a child not yet born cannot be predicted. To try to do so is to devalue human life. Historical information on various nations with eugenic movements of one kind or another is given.

Author(s): Heidi Ledford From designer babies to engineered mosquitoes, advances in genome-editing technologies such as CRISPR-Cas9 have raised the possibility of http://www.nature.com/doifinder/10.1038/522020a - and http://www.nature.com/doifinder/10.1038/519272a . In a preliminary 130-page [...]