This Week in CGREAL This Week in CGREAL Home * Genetics in the News * Genetics in the Literature * Archive
Genetics in the News
Genetic test announced for suicidal ideation in patients using antidepressant drugs "In a unique move, the company is inviting physicians and patients across the country to participate in prospectively collecting data to confirm and extend the predicted risk of the Mark-C test. ..." [Related: Reason Magazine - I Scream, You Scream, We All Scream for Gene Screens! "Will quickie genetic tests for suicide genes make us healthier and happier? ..." Suicide-Gene Test Could Spawn Customized Drugs "After years of unfulfilled promises, genomics finally seems poised to impact health care. ..."]
Genome abuse (Nature) "Citizens are right to resist government pressure to expand population DNA databases. ..." [Related: Outrage as DNA profile of seven-month-old baby is added to register | the Daily Mail "Civil liberties organisation Liberty said the baby girl's case was "a chilling example of how out of control the DNA database has become". ..." BBC NEWS | All UK 'must be on DNA database' "The whole population and every UK visitor should be added to the national DNA database, a senior judge has said. ..."]
Kids Who Are Picky Eaters (New York Times) "The message to parents: It s not your cooking, it s your genes. ..."
The 2007 Nobel Prize in Physiology or Medicine "..to Mario R. Capecchi, Martin J. Evans and Oliver Smithies for their discoveries of "principles for introducing specific gene modifications in mice by the use of embryonic stem cells" ..."
Genes influence people's economic choices "... study indicates that there is a genetic component to people's perception of what is fair and what is unfair. ..."
Drug Makers, FDA Partner on Drug Safety "A rare collaboration has begun attacking one of the toughest problems in medicine: why severe drug side effects strike a small percentage of patients. ..."
Foundation Announces Dramatic Acceleration in DNA Collections and Analysis Activity - Yahoo! Finance "SMGF is on course to collect more than 30,000 DNA samples, and anticipates that it will surpass 100,000 samples and corresponding genealogical records by year end. ..."
Gene Sherpas: Personalized Medicine and You: Interesting Readers "I was contacted by one of my readers to help her find someone to "donate" her genome to. ..."
Rules to stop research exploitation in Pacific "Using the Pacific for research is about to get a whole lot harder - the Cook Islands has set up strict new rules to reign in foreign researchers exploiting the region. ..."
Do Blacks Have Genetic Weakness to Asthma? - washington post ".. a new study that reaches the controversial conclusion that genetic differences may underlie racial disparities." ..."
454 sequencing uncovers significant genetic variation "Research suggests that structural variation plays an important role in genetic variation ..."
The 'arms' race: Adult steroid users seek muscles, not medals "The focus on 'cheating' athletes and at risk youth has led to irrelevant policy ..."
Avoiding sweets may spell a longer life, study in worms suggests "worms live to an older age when they are unable to process the simple sugar glucose ..." [Related: Worm study sheds light on human aging, inherited diseases "... a discovery is shedding light on how the human body ages and how doctors could one day limit or reverse genetic mutations that cause inherited diseases ..."]
Evil genes made me do it ""Evil Genes" is the first book to tie together neuroscientific and genetic results that explain human evil, showing that some deceitful, manipulative, and even sadistic behavior appears to be programmed genetically. ..."
Genomic technologies to identify toxic chemicals should be developed "A new report recommends that government agencies enhance their efforts to incorporate genomic data into risk assessments of chemicals and medicines, and calls for a concerted effort to fully develop these methods' potential to protect public health. ..."
MIT links gene to cholesterol ".. researchers have discovered a link between a gene believed to promote long lifespan and a pathway that flushes cholesterol from the body. ..."
Researchers expand efforts to explore functional landscape of the human genome"Full-scale ENCODE project will survey entire human instruction book ..."
Study finds that people are programmed to love chocolate
"...scientists have linked the all-too-human preference for a food chocolate to a specific, chemical signature that may be programmed into the metabolic system and is detectable by laboratory tests. ..."
Trial seeks 'genetic fingerprint' for predicting drug effectiveness "Researchers believe identifying a genetic fingerprint could help predict which specific therapies will be most effective for patients with gastric cancer. ..."
Which came first, the chicken genome or the egg genome? "New insights into the evolution of the human genome ..."
Statement on Direct-To-Consumer Genetic Testing - Forbes.com
"The American College of Medical Genetics (ACMG) advises consumers to involve a genetics expert in the process of genetic testing. ..."
Stem cell bank for drug testing may cut animal experiments | Science | The Guardian "Plans to build a bank of stem cells that can be used to test the safety of new medicines were announced yesterday by a government-backed consortium of scientists and drug companies. ..."
Genetic Information Nondiscrimination Act Is A First Step "But enacting GINA will do little to change the very real problem of people fearing that employers will have access to their genetic information ..."
BioNanoatrix and Complete Genomics Receive Award to Develop Sequencing Platform for $100 Genome "Project to Sequence Entire Human Genome in Eight Hours at a Cost of $100 ..."
Poor trial design leaves gene therapy death a mystery : Nature Medicine "The gene therapy trial during which a 36-year-old Illinois woman died in July was inappropriately designed, experts said ..." [Related: Death in gene therapy trial raises questions about private IRBs : Nature Biotechnology ".. the incident has turned a spotlight on for-profit IRBs, and the field makes many bioethicists instinctively uneasy. ..."]
Technology Review: Human-Animal Cybrids "Ian Wilmut, the biologist who spearheaded the cloning of the now renowned Dolly the sheep, plans to submit his own proposal for cybrid research in the next few months. ..."
The Scientist : The Future of Public Engagement "Scientists must learn to focus on presenting, or "framing," their messages in ways that connect with diverse audiences. ..."
Hospices Become Testing Grounds (WSJ) "As more Americans spend their final days in hospices, drug makers and doctors are asking patients there to take part in tests of new medicines. ..."
Report Assails F.D.A. Oversight of Clinical Trials (New York Times) "The Food and Drug Administration does very little to ensure the safety of the millions of people who participate in clinical trials, a federal investigator has found. ..."
A haunting inheritance (Daily Herald ) "A test could tell whether two generations of Frank Jackowski's family carry the gene that killed him. But do they want to know? ..."
Seeking Columbus s Origins, With a Swab (New York Times) "... a Spanish geneticist extracted genetic material from a cache of Columbus s bones in Seville to settle a dispute about where he was buried. Ever since, he has been beset by amateur historians, government officials and self-styled Columbus relatives of multiple nationalities clamoring for a genetic retelling of the standard textbook tale. ..." [Related: Secrets of the Grave (PARADE Magazine) " Biohistory the combination of biological testing and history is one of the most exciting new fields of scientific inquiry. But it also raises serious ethical questions. ..."]
Steps on the road to personalized medicine ( Nature Reviews Drug Discovery) "The incorporation of information on genetic testing into the product label of the anticoagulant warfarin and the FDA marketing clearance for an associated test represent a significant advance for the field of pharmacogenetics. ..."
Genetics in the Literature
(2006). "Embryonic, fetal and post-natal animal-human mixtures: an ethical discussion." Hum Reprod Genet Ethics 12(2): 35-60.
(2007). "How to be good?" Nature 449(7163): 638-638.
"Mentoring and training for ethical behaviour aren't all they're cracked up to be. ..."
Alonso, M. A., F. J. D. Iglesias, et al. (2007). "Recommendations on the ethical aspects of specimen collections and human biobanks for biomedical research purposes." Revista Espanola De Salud Publica 81(2): 95-111.
"This document is aimed at providing some recommendations to serve as a guideline and encourage responsible deliberation among all those involved, thus contributing to society's recognition and trust in the forthrightness of the research and the solidary end purposes thereof. A total of nineteen recommendations have been drafted concerning the following aspects: Biobank organization and operation, degree of specimen identification, data management guarantees, consent for taking part in research and for the incorporation of specimens into the biobank, the right to know and the right not to know, consent for transferring specimens to third parties, specimen harvesting in deceased individuals, management of the pre-existing biospecimen collections, title to and commercialization of specimens and research findings and resulting payback benefiting the community. ..."
"We asked 20 leaders in the field succinctly to summarize and comment on clinical gene therapy research in their respective areas of expertise and these are published in two parts in the Progress and Prospect series. ..."
"OBJECTIVE: To assess participation bias in the assembly of a specimen repository for genetic studies and to examine the association of participation with outcome within the Olmsted County myocardial infarction (MI) cohort. CONCLUSION: A variety of sources can be used to assemble community specimen repositories. Baseline characteristics differed between participants and nonparticipants and, among participants, by specimen source. Participants who provided blood specimens had better outcomes than those who provided tissue specimens. . ..."
"Genome-wide searches for signals of selection, plus studies of specific candidate loci and candidate phenotypes, have identified genes that show population differences due to adaptation to pathogens, climate, diet and possibly cognitive challenges. Some past adaptations are now maladaptive, and can lead to disease. However, the history of adaptation is complex, and adaptive explanations are often unsupported by hard evidence. ..."
Barnett, J. E., E. H. Wise, et al. (2007). "Informed consent: Too much of a good thing or not enough?" Professional Psychology-Research and Practice 38(2): 179-182.
"Three invited experts provide commentaries on issues raised, questions asked, and dilemmas posed that will, the authors hope, fully stimulate further consideration and discussion of these important issues. The commentaries also broaden the discussion of informed consent in all roles in which psychologists serve. Specific recommendations are made for practicing psychologists for the ethical and effective application of informed consent in their work. ..."
Beck, M. (2007). "Illness, Disease and Sin: The Connection between Genetics and Spirituality." Christian Bioethics: Non-Eucumenical Studies in Medical Ethics 13(1): 67-89.
"The New Testament, while rejecting any superficial connection between illness and sin, does not reject a possible connection between illness and a person's relationship with God. Many diseases have genetic backgrounds. Defective genes, however, do not necessarily lead to subsequent illness. Genes have to be switched on or off. Only activated genes trigger pathological change. The human brain and all of man's thinking and feeling are intimately connected with such activations. We may thus conclude that both inner life and religious outlook on life are relevant to the origin and development of diseases. (edited) ..."
"We report our experience from the first 18 months of public participation in the Genographic Project, during which we have created the largest standardized human mitochondrial DNA (mtDNA) database ever collected, comprising 78,590 genotypes. Here, we detail our genotyping and quality assurance protocols including direct sequencing of the mtDNA HVS-I, genotyping of 22 coding-region SNPs, and a series of computational quality checks based on phylogenetic principles. ..."
Bexelius, C. (2007). "Will forensic use of medical biobanks decrease public trust in healthcare services? Some empirical observations." Scandinavian Journal of Public Health 35(4): 442.
"The authors tested the prevalent hypothesis that forensic use of medical biobanks has a negative impact on public trust in healthcare services. Method: A questionnaire was sent to 1,184 inhabitant in the age group 20-80 years in Stockholm County, Sweden, in November 2005. Results: With a response rate of 68.4%, the results showed that a majority (88.1%) of the respondents thought that it would be acceptable for the police to gain access to genetic samples stored in relation to healthcare; 5.6% said no and 6.3% were uncertain. In the case of police access to medical biobanks, a minority (6.3%) indicated that this would have a negative impact on their trust, a larger proportion (37.8%) that it would influence their trust in the healthcare services positively, and 56% stated that it would not affect their trust at all. Conclusion: The hypothesis tested appears to be unfounded. This should cause us to reconsider prevalent assumptions and current policies on the interface of medical and forensic genetics. ..."
Blow, N. (2007). "Genomics: The personal side of genomics." Nature 449(7162): 627-630.
"We present an overview of the current status of expanded newborn screening programmes in Europe. Given the relatively common genetic background of most European populations and similar health care systems, the reasons for the differences observed appear arbitrary and contrary to the optimal benefit of this important preventive health measure. Harmonization of disease screening panels, spectrum of metabolites analysed, sizes of screening laboratories, analytical procedures, follow-up management and proficiency and quality testing is urgently warranted on the European level. . ..."
Bowen, L. M. (2006). Reconfigured Bodies: Ownership, responsibility, and control relations in the biotechnology age. Rhetoric and Technical Communication. Houghton, Michigan, Michigan Technological University. PhD: 136.
Brandenburg, K. (2007). "A new sociological imperative: Towards engaging with pre-implantation genetic diagnosis." Health Sociology Review 16(1): 79-88.
Brassington, I. (2007). "John Harris' Argument for a Duty to Research." Bioethics 21(3): 160-168.
"John Harris suggests that participation in or support for research, particularly medical research, is a moral duty. I suggest that all three of Harris's line fail to provide a compelling duty to research and spell out why. Moreover, not only do the lines of argument fail in their own terms: in combination, they turn out to be antagonistic to the very position that Harris wants to defend. I claim that Harris's argument for the existence of such a duty is not the best way to establish it. (edited) ..."
Brigandt, I. (2006). A theory of conceptual advance: Explaining conceptual change in evolutionary, molecular, and evolutionary developmental biology. Philosophy. Pittsburgh, University of Pittsburgh. PhD: 501.
Brosnan, K. (2006). Evolutionary theory and the autonomy of ethics. Philosophy. Madison, University of Wisconsin--Madison. PhD: 130.
"However, the example of human self-domestication may illustrate that scientific ideas, especially when dealing with human biology, are prone to misuse, particularly if "is" is confused with "ought", i.e., if moral principles are deduced from biological facts. Although such naturalistic fallacies appear to be banned, modern genetics may, at least in theory, pose similar ethical problems to medicine, including psychiatry. In times during which studies into the genetics of psychiatric disorders are scientifically more valued than studies into environmental causation of disorders (which is currently the case), the prospects of genetic therapy may be tempting to alter the human genome in patients, probably at costs that no-one can foresee. In the case of "self-domestication", it is proposed that human characteristics resembling domesticated traits in animals should be labelled "domestication-like", or better, objectively described as genuine adaptations to sedentism. ..."
Buchanan, D. R. and F. G. Miller (2006). "A Public Health Perspective on Research Ethics." Journal of Medical Ethics: The Journal of the Institute of Medical Ethics 32(12): 729-733.
"On the basis of a duty to protect the population as a whole, a fiduciary obligation to realise the social value of the research and the moral responsibility to distribute the benefits and burdens of research fairly across society, how a public health perspective on research ethics results in fundamental reassessments of the proper course of action for two salient topical issues in research ethics is shown: stopping trials early for reasons of efficacy and the conduct of research on less expensive yet less effective interventions. (edited) ..."
"The regulation of nutrigenomic services is slowly evolving, but there is little indication of increased professional capacity to support service delivery. Primary care physicians have minimal training in nutrition and genetics, and medical geneticists are in high demand and short supply. Dietetic practitioners are experts in nutrition science and interest in nutrigenomics is growing among members of this professional group. However, as with physicians, dietetics practitioners would require considerable training to bring nutrigenomics into their practice capacity. A downside of regulatory restrictions on direct consumer access to nutrigenomics companies is that responsible businesses may be hindered in meeting emergent public demand while health care professional groups have not yet developed capacity to provide nutrigenomics services. ..."
Cerullo, M. A. (2006). "Cosmetic psychopharmacology and the President's Council on bioethics." Perspectives in Biology and Medicine 49(4): 515-523.
"The Council's arguments against cosmetic psychopharmacology depend heavily on the mistaken belief that Prozac and similar antidepressants are mood brighteners in healthy subjects. The empirical evidence, however, clearly indicates that these drugs are not forms of cosmetic psychopharmacology, thus negating much of the Council's arguments. The use of pharmaceutical agents to enhance mood or personality in normal individuals should not be rejected a priori. Instead, the effects of each agent on the individual and on society must be weighed using sound ethical reasoning and the best evidence available. ..."
"We consider the purported right not to have one's own genetically related children from a property-based perspective. We argue that even if we concede that such (property) rights do exist, those rights become limited in scope and application upon engaging in reproduction. We want to show that once an IVF embryo is created for the purpose of reproduction, any right not to have genetically-related children that may be based in property rights over genetic information is ceded. There is thus no right to prevent one's IVF embryos from being brought to birth on the basis of a right to avoid having one's own genetic children. Although there may be reproductive rights over gametes and embryos, these are not grounded in genetic information. ..."
"I offer a critical perspective on a large-scale population study on gene-environment interactions and common diseases proposed by the US Secretary of Health and Human Services' Advisory Committee on Genetics, Health, and Society (SACGHS). I argue that for scientific and policy reasons this and similar studies have little to add to current knowledge about how to prevent, treat, or decrease inequalities in common diseases, all of which are major claims of the proposal. I use diabetes as an exemplar of the diseases that the study purports to illuminate. I conclude that the question is not whether the study will meet expectations or whether the current emphasis on a genetic paradigm is real or imagined, desirable or not. Rather, the question is why, given the flaws of the science underwriting the study, its assumptions remain unchallenged. Future research should investigate the reasons for this immunity from criticism and for the popularity of this and similar projects among laypersons as well as among intellectuals. ..."
"One issue affecting business is genetically engineering children to have characteristics, e.g., deafness, which render them disabled in work environments. Since business is a very large part of society, citizen responsibilities toward it in regard to intentionally creating deaf children should be examined. It is my contention that designing disabled offspring is unethical on the grounds that it causes undue injury to businesses without their permission in any form. ..."
Cooper, R. J., P. Bissell, et al. (2007). "A new prescription for empirical ethics research in pharmacy: A critical review of the literature." Journal of Medical Ethics 33(2): 82-86.
"A descriptive and critical review of the extant empirical pharmacy ethics literature is provided here. A chronological change from quantitative to qualitative approaches is highlighted in this review, as well as differing theoretical approaches such as cognitive moral development and the four principles of biomedical ethics. Research with pharmacy student cohorts is common, as is representation from American pharmacists. Many examples of ethical problems are identified, as well as commercial and legal influences on ethical understanding and decision making. In this paper, it is argued that as pharmacy seeks to develop additional roles with concomitant ethical responsibilities, a new prescription is needed for empirical ethics research in pharmacy-one that embraces an agenda of systematic research using a plurality of methodological and theoretical approaches to better explore this under-researched discipline. ..."
Daigle, J. R. (2006). United States realism and the (conceptual) problem of race: Realists and race science from 1877 to 1905. Madison, University of Wisconsin--Madison. PhD: 370.
" The purpose of this paper is to present some of the major problems that screening programmes will face in the near future. ..."
"We aimed to explore theoretically and empirically the role of written information in "informing" participants in research. We conducted a qualitative study involving semi-structured interviews with 29 unpaid healthy volunteers who took part in a genetic epidemiology study in Leicestershire, UK. Data analysis was based on the constant comparative method. We found that people may make sense of information about research, including the content of written information, in complex and unexpected ways. Many participants were unable to identify precisely the aim of the study in which they had participated, saw their participation as deriving from a moral imperative, and had understandings of issues such as feedback of DNA results that were inconsistent with what had been explained in the written information about the study. They had high levels of confidence in the organisations conducting the research, and consequently had few concerns about their participation. These findings, which suggest that some "misunderstanding" may be a persistent and incorrigible feature of people's participation in research, raise questions about the principle of informed consent and about the role of written information. ..."
Ducournau, P. (2007). "The viewpoint of DNA donors on the consent procedure." New Genetics and Society 26(1): 105-116.
"This paper questions the participants' viewpoint in a research in genetic epidemiology on the collection procedure of their consent. Stemming from a qualitative sociological approach through ethnographic observations and interviews (n = 35), it aims at understanding the actual experience of the procedure. Through collected speeches, it emphasizes the existence of contrasted appreciations of the signature procedure of the consent ( from positive reactions to attitudes of mistrust). This article identifies the manner in which these appreciations are built. It suggests that the taking into account of these different appreciations and their logics may benefit a co-construction of plans for the constitution of a 'DNA bank' in population. Finally, some modalities are proposed briefly in the conclusion. ..."
"In this article we explore and critically assess recent developments in bio-gerontology which promise a delaying of the ageing process in human beings through some form of significant 'life-extension'. Various arguments for prolonging the human life span are being discussed intensely in the biomedical sciences: sociology has yet to make a tangible contribution to these debates. Although significant modifications to the human lifespan remain a futuristic goal, we argue that the life-extension project has immediate repercussions for contemporary society. Drawing on the available literature in the humanities and the social sciences, we discuss the value of the life-extension project and its social justice, human rights and ethical implications. For example, we consider, assuming the presence of economic scarcity, various aspects of increasing social inequality which would arise from any significant growth in life expectancy. We argue that this form of biomedical research has potentially far greater negative consequences for the status of humans than has been previously recognised, and conclude with a consideration of the religious and ethical implications of 'prolongevity'. ..."
"We conclude that about 1/3 of our genes started to evolve as human-specific lineages before the differentiation of human, chimps, and gorillas took place. This explains recurrent findings of very old human-specific morphological traits in the fossils record, which predate the recent emergence of the human species about 5-6 MYA. Furthermore, the sorting of such ancestral phenotypic polymorphisms in subsequent speciation events provides a parsimonious explanation why evolutionary derived characteristics are shared among species that are not each other's closest relatives. ..."
Egalite, N., V. Ozdemir, et al. (2007). "Pharmacogenomics research involving racial classification: qualitative research findings on researchers' views, perceptions and attitudes towards socioethical responsibilities." Pharmacogenomics 8(9): 1115-26.
"Objectives: To investigate the views and perceptions of researchers on the use of racial classification in pharmacogenomics research using a qualitative research methodology. Methods: We interviewed genomics researchers about their perceptions on pharmacogenomics, race and science, population-based genomics research and the attendant implications for their professional duties. Researchers engaged in genomics investigations appear to display a guarded and yet favorable perception on the utility of race in pharmacogenomics investigations. Interestingly, researchers remain sceptical of their own roles vis-a-vis ethics and delegating socioethical responsibilities to ethicists was seen as a way to remedy this shortfall instead of broadening the scope of self-governance in scientific practice to socioethical issues. While these data do not necessarily reflect views and attitudes of all scientists, future science policy questions on how best to integrate molecular genetics with race-based therapeutics and incorporation of socioethical reflection in daily practice of genomics research need to consider the perceptions of scientists and similar 'upstream control points' in the process of knowledge generation and dissemination. ..."
Epstein, M. (2007). "Is the NHS Research Ethics Committees System to Be Outsourced to a Low-Cost Offshore Call Centre? Reflections on Human Research Ethics after the Warner Report." Journal of Medical Ethics: The Journal of the Institute of Medical Ethics 33(1): 45-47.
"The recently published Report of the AHAG on the Operation of NHS Research Ethics Committees (the Warner Report) advocates major reforms of the NHS research ethics committees system. The main implications of the proposed changes and their probable effects on the major stakeholders are described. ..."
Epstein, M. (2007). "Legal and institutional fictions in medical ethics: A common, and yet largely overlooked, phenomenon." Journal of Medical Ethics 33(6): 362-364.
"The first aim of this paper is to draw attention to the fact that legal and institutional fictions have indeed pervaded biomedical ethics. The second aim is to suggest a historical explanation of these strange artefacts in an attempt to demystify them. The conclusions of this venture may offer valuable insights into the social role and history of bioethics and biomedical ethics. More important, though, they may provide a theoretical platform for a much-needed change in the provision of healthcare based on restoring the autonomy of doctor-patient relationships. ..."
Faubion, J. D. and J. A. Hamilton (2007). "Sumptuary kinship." Anthropological Quarterly 80(2): 533-559.
"The essay pursues three ends. Two are theoretical. The first of these seeks to clarify and elaborate the consequences of approaching kinship as a distinctive system of subjectivation that yields an equally distinctive ethical domain. The second pursues the characterization of such a system as autopoietic or self-producing. The third end is diagnostic. It seeks to illuminate the modulations of the outopoetic economy of kinship in a global market that establishes consumption as its fulcrum. Treating the wedding and the funeral industries, the controversies surrounding same-sex marriage and the kinning of DNA, it reveals the systematic accentuation of the sumptuary and the demotion of keeping while giving in favor of acquiring while spending. Yet it also reveals an ethics of kinship that, if permitting the intrumentalization of the inconsumable, often does so for distinctly antiaquisitive and anti-sumptuary ends. ..."
Feil, K. (2006). Evolution and the developmental perspective in medicine: The historical precedent and modern rationale for explaining disorder and normality with evolutionary processes. Philosophy. Chicago, University of Chicago. PhD: 249.
" Certain racially classified social groups suffer disproportionately from tobacco-caused morbidity and mortality. Recent advances in genetics are leading researchers to examine variables that may account for this. However, it is critical that investigators proceed with caution and utilize transdisciplinary approaches. A number of fundamental questions might be used to stimulate consensus building in this area of science. What is race and how should its complexity be operationalized? Is it possible/likely that pharmacogenetics will allow us to match smokers with cessation strategies based on a gene-psychological profile? What are the most important conceptual and methodological issues for a research agenda in this area? ..."
Fisher, C. B., S. Z. Kornetsky, et al. (2007). "Determining Risk in Pediatric Research with No Prospect of Direct Benefit: Time for a National Consensus on the Interpretation of Federal Regulations." American Journal of Bioethics 7(3): 5-10.
"During the past decade, three federally-charged committees have addressed these ambiguities. The committees have reached similar conclusions on interpretations of language within regulations sections 45CFR46.404 and 406; these conclusions are remarkably consistent with recent international recommendations and those of the original National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research report from which current regulations are based. Drawing on the committees' public reports, this article identifies the ethical issues posed by ambiguities in regulatory language, summarizes the committees' deliberations, and calls for a national consensus on recommended criteria. (edited) ..."
"To improve drug safety, the FDA updates labels of previously approved drugs as new clinical and genetic evidence accrues. The labels of medical products serve to inform prescribers and patients about potential ways to improve the benefit/risk ratio and/or optimize doses of medical products. On August 16, 2007, the FDA updated the label of warfarin to include information on pharmacogenetic testing and to encourage, but not require, the use of this information in dosing individual patients initiating warfarin therapy. The FDA completed the label update in August 2007. ..."
Gallimore, R. (2006). Traditionalizing epistemology: Traditional theory of knowledge in a scientific world. Philosophy. Rochester, NY, University of Rochester. PhD: 369.
"This opinion survey and the subsequent analysis of the results in ethical terms may serve to reveal the criteria and the degree of information that society has with regard to DNA databases. In the study, 73.20% (SE 1.12%) of the population surveyed was in favour of specific legislation for computer files in which DNA analysis results for forensic purposes are stored. ..."
"This article discusses the legal tools utilized during the three-month search for Bradley Murdoch and a two-month court battle over his DNA sample in Northern Territory. The author concludes with a proposal for a DNA sampling regime that might have given the investigators a more satisfactory means of catching Murdoch. He explains that this proposal is a significant change to the present law and that the Falconio investigation alone can scarcely justify it. He asserts that the main rationale for a group sampling power flows from the contrast between traditional investigative techniques and the use of DNA identification.. ..."
Gavaghan, C. (2007). "Right Problem, Wrong Solution: A Pro-Choice Response to "Expressivist" Concerns about Preimplantation Genetic Diagnosis." Cambridge Quarterly of Healthcare Ethics 16(1): 20-34.
"' In this article, I argue that, while advocates of a pro-choice approach to PGD need not, and should not disregard concerns about the effects of reproductive technologies on disabled people, it is by no means clear that the best way of addressing such concerns lies in stricter regulation. On the contrary, it may be that seeking to limit their use to the avoidance of genetic disability or illness in fact risks reinforcing the negative messages about which advocates of the 'expressivist' position are justifiably concerned. ..."
George, K. (2007). "What about the women? Ethical and policy aspects of egg supply for cloning research." Reproductive Biomedicine Online 15(2): 127-133.
"This paper critically examines proposals for ova supply such as altruistic donation, surplus IVF eggs and commercial sale. It questions the meaningfulness of informed consent and the risk-benefit ratio in a climate where powerful economic and social forces increasingly view the risks to women as the necessary trade-off for scientific advance. ..."
"Mosaic tablet, dynamic document, or dinosaur? ..."
Greenberg, D. S. (2007). Science for Sale: The Perils, Rewards, and Delusions of Campus Capitalism, University of Chicago Press.
"But just because the threat is overhyped, Greenberg argues, doesn t mean that there s no danger. From research that has shifted overseas so corporations can avoid regulations to conflicts of interest in scientific publishing, the temptations of money will always be a threat, and they can only be countered through the vigilance of scientists, the press, and the public. ..."
Grimm, D. J. (2007). "The demographics of genetic surveillance: Familial DNA testing and the Hispanic community." Columbia Law Review 107(5): 1164-1194.
"This Note argues that familial DNA testing will disproportionately affect the Hispanic community. Familial testing, which uses biological relatedness as the trigger for criminal investigation and DNA extraction, ensures that groups with more children and large families relative to other groups will beat higher risk for genetic surveillance. This is especially true given the dynamics of the CODIS search process, which creates a cumulative, generational effect that is likely to replicate previous search outcomes. As a result, demographic trends ensure that innocent members of the Hispanic community will disproportionately experience privacy invasions as a result of familial testing. The Note then examines likely constitutional challenges to familial testing under the Fourteenth and Fourth Amendments, concluding that a Fourth Amendment probable cause argument provides the best hope of redress. ..."
Hacker, A. J. (2006). Unintended consequences in public policy: Formulation and implementation of Michigan's Safe Delivery of Newborns law. Public Affairs and Administration. Kalamazoo, Western Michigan University. PhD: 226.
Hamilton, S., J. Hepper, et al. (2007). "Consent gained from patients after breast surgery for the use of surplus tissue in research: an exploration." Journal of Medical Ethics 33(4): 229-233.
"Objectives: (1) To investigate the quality of consent gained for the use in research of tissue that is surplus after surgery. (2) To compare the use of two consent forms: a simple locally introduced form and a more complex centrally instigated form. (3) To discuss the attitudes of patients towards the use of their surplus tissue in research. The findings suggest that traditional models of informed consent are not universally applicable and, in this case, seem to overstate what people wish to know. The simple consent form achieved a better quality of informed consent and provided a better model of practice than the complex form, and it seemed that a focused approach to consent seeking is more effective and acceptable than more complex approaches. ..."
Hansson, M. G. (2007). "For the safety and benefit of current and future patients." Pathobiology 74(4): 198-205.
"In this article I argue that a `safety principle' should have priority and suggest how this could be implemented in clinical practice and in association with biomedical research. ..."
Hellmig, S. (2007). "Influence of ethnic background on genetic susceptibility to H. pylori infection." European Journal of Gastroenterology & Hepatology 19(8): 730-731.
Hodge, J. G. (2007). "The flaw of informed consent." American Journal of Bioethics 7(3): 52-53.
Horrobin, S. (2006). "Immortality, human nature, the value of life and the value of life extension." Bioethics 20(6): 279-292.
"A critique is offered of an attempted argument against aging intervention from a proto-conservative worry about a purported threat to human nature. Immortality is found to be a red herring, but a revealing one. Further, the classic liberal view is examined and found wanting in terms of the gravity of its own commitment to, and fullness of its account of the value of life, and the value of life extension. An analysis of the liberal conception of personhood is proposed that both defines persons necessarily as processes, and demonstrates the inalienable quality of the value of life extension to persons so defined. ..."
Huntington, I. and W. Robinson (2007). "The many ways of saying yes and no: reflections on the research coordinator's role in recruiting research participants and obtaining informed consent." Irb 29(3): 6-10.
Hyman, D. A. (2007). "Institutional review boards: Is this the least worst we can do?" Northwestern University Law Review 101(2): 749-773.
"In this article I develop heuristic types for understanding how the U.S. evangelical Christian subculture engages the newer science of molecular biology as it works to legitimate and enchant religious worldview: 1.) symbolic engagement, employing genes and DNA as sacred icon; 2.) disputatious engagement debating genetic essentialism and scientific naturalism; and 3.) performative engagement, fortifying theism through scientific performance. I argue that the power of these types to have an impact on audiences lies in sophisticated subcultural levels of discursive engagement through media employment as well as cursory lay knowledge of molecular biology and a pervasive cultural faith and doubt in scientific advancement. ..."
Johnson-Greene, D. (2007). "Evolving standards for informed consent: Is it time for an individualized and flexible approach? Commentary." Professional Psychology-Research and Practice 38(2): 183-184.
Karpin, I. (2007). "Choosing disability: preimplantation genetic diagnosis and negative enhancement." J Law Med 15(1): 89-102.
"This article examines the unusual circumstance of what the author has tentatively termed "negative enhancement". This term is used to describe those instances where individuals seek to use preimplantation genetic diagnosis (PGD) to achieve outcomes that, commonly, are socially not preferred. This inevitably raises the question of how we define disability and who is best placed to make decisions about the kind of kin we want to create. ..."
"We compared the influence of awareness of the Tuskegee Syphilis Study and the presidential apology for that study on the willingness of Blacks, non-Hispanic Whites, and Hispanics to participate in biomedical research. The Tuskegee Legacy Project Questionnaire was administered to 1133 adults in 4 US cities. Adjusted multivariate analysis showed that, compared with Whites, Blacks were nearly 4 times as likely to have heard of the Tuskegee Syphilis Study, more than twice as likely to have correctly named Clinton as the president who made the apology, and 2 to 3 times more likely to have been willing to participate in biomedical studies despite having heard about the Tuskegee Syphilis Study (odds ration [OR]=2.9; 95% confidence interval [CI]=1.4, 6.2) or the presidential apology (OR=2.3; 95% CI=1.4, 3.9). ..."
Keeling, P. J. (2007). "GENOMICS: Deep Questions in the Tree of Life." Science 317(5846): 1875-1876.
"This paper explores some of the different kinds of ambivalence about genetics expressed in 12 focus groups by a range of publics and professionals. Within the professional groups participating in the study, we found ambivalence was seldom foregrounded in favour of a discourse of risk management and education of the public. When ambivalence was expressed, it seemed to be circumscribed and solved by rational action although we did identify moments of reflexivity and personal ambivalence. The lay groups expressed ambivalence and concern about some of the same issues as the professional groups and once again ambivalence often remained muted. However, it was less easily countered by proposed regulatory or commercial solutions. Personal experience sometimes fostered critical reflection. Moral ambivalence was evident, sometimes based on religious values. Our analysis suggests that neither the stories of ambivalence as a force for democratization or professional domination ring true. The professionals and lay people in our study were struggling to manage expertise, risk and morality, as they examined and reflected upon the social and ethical aspects of the new genetics. ..."
" We argue that the integration of genomics into health care and disease prevention requires a strong medicine-public health partnership in the context of a population approach to a translational research agenda that includes four overlapping areas: (1) a joint focus on prevention--a traditional public health concern but now a promise of genomics in the realm of individualized primary prevention and early detection, (2) a population perspective, which requires a large amount of population-level data to validate gene discoveries for clinical applications, (3) commitment to evidence-based knowledge integration with thousands of potential genomic applications in practice, and (4) emphasis on health services research to evaluate outcomes, costs, and benefits in the real world. A strong medicine-public health partnership in the genomics era is needed for the translation of all scientific discoveries for the benefit of population health. ..."
"I argue that existing proposals to extend protections to third parties do not provide comprehensive protection, defend the notion that third parties generally deserve protections, and sketch possible mechanisms for their provision. ..."
"This essay introduces the concept of "biodiplomacy" through a combination of philosophical reflection, historical and etymological arguments, media reports, critical analyses of bioethics controversies, and the author's own participation as a "diplomat" of anthropology for an international commission about science and society. It explores how the notion of corps diplomatique that once represented the Enlightenment ideal of an exclusive, "family of diplomats" is apparent today as the diffusion of an open, more participatory "global talk." The effects of this development on critical social theory are discussed under the rubric of "biodiplomatica"; particular attention is paid to (i) the immanence of critique as a relational mode of action for interventions in public anthropology, and (ii) the theorist's role in seeking to engage a critically reflexive anthropology of bioethics. ..."
Kottow, M. H. (2007). "Should research ethics triumph over clinical ethics?" Journal of Evaluation in Clinical Practice 13(4): 695-698.
"Of the various reasons that make practitioners wary of applying research results, this paper explores some consequences of scientists' and research sponsors' adamant insistence that reliable science can only be achieved if protocols adhere exclusively to the ethics of investigation basically reduced to obtaining informed consent and avoiding risks as far as possible. This means, and has been explicitly contended, that neither patients nor doctors should fall prey to the therapeutic fallacy which leads them to expect that research will also take care of patient-subjects' medical welfare. Doctors would betray their profession if they allowed clinical research to disregard their therapeutic obligations in favour of strict scientific methodology, as is bound to happen when using placebos in spite of existing therapy, disregarding equipoise, disallowing benefit claims, emphasizing the distinction between research ethics and clinical ethics but denying any difference between therapeutic and non-therapeutic trials. That scientists and practitioners should not agree on needs and priorities in the medical context, constitutes an additional factor in the less than optimal reception of EBM by the health care professions. ..."
Krousel-Wood, M., P. Muntner, et al. (2006). "Does waiver of written informed consent from the institutional review board affect response rate in a low-risk research study?" J Investig Med 54(4): 174-9.
"Data from a cross-sectional survey of 177 older patients with hypertension enrolled in the managed care Medicare risk product were used to assess participation rates pre- and postwaiver of written informed consent and HIPAA authorization. We identified a substantial increase in participation rates postwaiver of written informed consent and HIPAA authorization in a minimal-risk survey. The need for written documentation for minimal-risk surveys may negatively impact recruitment of blacks, women, and patients < 75 years old. ..."
"In general, advances in science cause a need or desire for regulation; however, it has been the opposite for hESC research – regulation and policy have set certain boundaries for scientific research and defined other research questions. This is especially evident in the USA, where federal funding policies have engendered specific research towards novel methods for isolating such cells that do not require destruction of human embryos. Due to the multiplicity of national policies, it will be almost impossible to reach global consensus in the near future. Nonetheless, this paradigm of regulation leading science may have significant implications for future research projects. Changes in hESC policy in the short term will influence longer-term research potential. ..."
Lederer, S. E. (2007). "The Nuremberg Medical Trial: The holocaust and the origin of the Nuremberg medical code." Isis 98(2): 424-425.
Lederman, R. (2006). "Anxious borders between work and life in a time of bureaucratic ethics regulation." American Ethnologist 33(4): 477-481.
"The articles in this forum focuses attention on informality in ethnographic fieldwork both at home and away. The articles in this forum provide several case studies; explore some of the historical, structural, and political contexts; and offer suggestions for action--as openings for discussion of the regulatory problems associated with informal research. But participant-observation is distinctive for placing contextual control into the hands of research participants, a characteristic that makes it uniquely problematic for IRB regulation. Exaggerating the point, the articles zero in on partly or wholly self funded research "at home," in which the fieldwork-everyday life distinction is maximally blurred. The articles' emphases complement one another. We hope that they productively inform, provoke, and refresh anthropological discussion. ..."
Lederman, R. (2006). "The perils of working at home: IRB "mission creep" as context and content for an ethnography of disciplinary knowledges." American Ethnologist 33(4): 482-491.
"Intricately implicated in these circumstances, this article describes a comparative investigation into the methodologically embedded ethical conventions of anthropology and related disciplines for which institutional review board (IRB) participation itself became inadvertently informative, work that also reveals a conflict between the ethics of human-subjects protections (confidentiality) and of collegial exchange (citation). ..."
"This article examines how postmodern theory deconstructs standard ideals of science and reason and allows medical humanities scholars to better contextualize the world of medicine. Using a recent issue of Newsweek magazine devoted to health and technology to illustrate the main points, this essay argues that contemporary popular influences on medicine are deeply problematic, and that through an appreciation of the dynamics of culture, medical humanities scholars can join the struggle over medical culture. This perspective allows medical humanities to make important contributions toward alternative circuits of medical representation, consumption, and identification. ..."
"The aim of this study was to assess the quality of written information for patients and families about genetic testing, from a range of European countries. Written information relating to genetic testing for five conditions was gathered from genetic departments across seven European countries. ..."
"The present study assessed the statistical advantage of the simultaneous consideration of genes and environment to investigate the effect of environmental risk factors on disease. In particular, we contemplated the possibility that several genes modulate the environmental effect. ..."
Louis, K. (2007). "Becoming a Scientist: The Effects of Work-Group Size and Organizational Climate." Journal of Higher Education 78(3): 311?
"The purpose of this article is to explore the effects of organizational and work-group characteristics on the socialization of new scientists. It focuses on the experiences of graduate students and postdoctoral fellows in science. The authors conclude that, in a typical university setting, both graduate and postdoctoral students are better off being in larger laboratories. With respect to early productivity, the authors found that life science graduate students and postdoctoral fellows publish and present more than their chemical engineering peers. In spite of the increasingly cross-disciplinary nature of scientific research, this finding suggests the need to continue to explore underlying disciplinary differences that may make generalizations about graduate education inappropriate. ..."
Macdonald, A., D. Pritchard, et al. (2006). "The impact of multifactorial genetic disorders on critical illness insurance: A simulation study based on UK Biobank." Astin Bulletin 36(2): 311-346.
"We describe here a simulation study of the UK Biobank project. We specify a simple hypothetical model of genetic and environmental influences on the risk of heart attack. A single simulation of UK Biobank consists of 500,000 life histories over 10 years; we suppose that case-control studies are carried out to estimate age-specific odds ratios, and that an actuary uses these odds ratios to parameterise a model of critical illness insurance. We conclude that the ability of such a study reliably to discriminate between different underwriting classes is limited, and depends on large numbers of cases being analysed. ..."
Mackenzie, C. (2007). "Feminist bioethics and genetic termination." Bioethics 21(9): 515-6.
"A brief discussion of how relational autonomy, phenomenological theories of embodiment and narrative approaches to clinical ethics can open up the space for more subtle feminist ethical reflection about genetic termination. ..."
"In this essay, I explain why the expressivist argument is valid despite the questionableness of its conclusion, and why the distinction between fetuses and born persons fails to provide an adequate counterargument to the expressivist conclusion. I also consider a compelling argument for prenatal testing to select against disabilities and propose a reformulation of this argument that, I think, supports prenatal testing for disabilities while avoiding discrimination against people born with disabilities...."
Malin, B. (2006). "Re-identification of familial database records." AMIA Annu Symp Proc: 524-8.
"In this paper, however, we introduce IdentiFamily, a software program that can link de-identified family relations to named people. The program extracts genealogical knowledge from publicly available records and ascertains the re-identification risk for specific family relations. We find robust genealogies on current populations can be extracted from online sources, such as newspaper obituaries and death records. We evaluate IdentiFamily on real world data for a state's capital city and demonstrate unique identifiability for approximately 70% of the population. IdentiFamily provides organizations with a tool to evaluate the anonymity of pedigrees prior to disclosure and design formal privacy protection techniques. ..."
Marks, J. (2007). "Grand anthropological themes." American Ethnologist 34(2): 233-235.
"The article discusses the relationship between genetics and anthropology. It reveals that genetics and anthropology overlaps in the area of ethnography and kinship. However, race was removed from the fundamental subject of biological anthropology because it was found that most human differences were cultural, polymorphic and clinal. The author believes that the emergence of new para-racial categories attest to the cultural construction and political salience of the categories. ..."
"Waiting for couples to have a baby with CF before they are identified as carriers denies them choice. A national policy on CF carrier screening in Australia, and determination to equitably fund such a programme, is required. ..."
Michelle, C. (2007). "'Human clones talk about their lives': media representations of assisted reproductive and biogenetic technologies." Media Culture & Society 29(4): 639-+.
"This article examines New Zealand print media representations of assisted reproductive and related biogenetic technologies, conceptualized as the products of a concordance of interest between media workers and reproductive specialists, biogenetic scientists and consumers. Source dependence also detracts from much-needed recognition of the professional and financial interests at stake in the growing privatization and commercialization of these technologies, and in the local context potentially undermines journalistic independence and integrity. ..."
" The National Institute on Aging's Interventions Testing Program (ITP) has developed a plan to evaluate agents that are considered plausible candidates for delaying rates of aging.. ..."
"I focus on the distinction between germline- and tissue transplant-related chimeric techniques implicit in Cobbe's essay and argue that the former poses more serious moral difficulties than the latter if the chimeric product is brought to term. I argue that specific criteria such as proportion of tissue uptake, mental capacity, and adherence with the organism's telos are more appropriately considered within a composite image of the living being reflecting its unique integrality. Human co-creativity with the Divine will inevitably prompt attempts to generate medically useful chimeras. Religious dialogue, combined with the categories of religious moral argument appearing in Cobbe's essay, will help to establish the outline of feasible policy guidelines addressing the complexities inherent in the creation of chimeras. ..."
"Although Richardson and Norgate's paper presents several valid criticisms of adoption studies of IQ that lead them to suggest a 'radical reappraisal' of such studies, a reappraisal even more radical than the one they suggest might, in fact, be warranted. The authors do not focus in their paper on concerns about the use and interpretability of heritability statistics. There is a deeper problem associated with adoption study methodologies, namely the use of an analysis-of-variation approach instead of an analysis-of-causation approach. Richardson and Norgate's paper does not address this problem, but it may very well represent the bulk of the iceberg. ..."
"Yet the neoconservative critique of biotechnology still borrows heavily from Karl Marx and owes more to the German philosopher Martin Heidegger than to the Scottish philosopher and political economist Adam Smith. Loath to identify these sources;or perhaps unaware of them;neoconservatives do not acknowledge these intellectual underpinnings or their implications. Thus, in the final analysis, their critique is incoherent and even internally inconsistent. By not acknowledging and embracing their intellectual roots, neoconservatives are left with a deeply ambivalent and often confused view of biotechnology and the society that gives rise to it. ..."
Muula, A. S. (2007). "Responsibilities and Obligations of Using Human Research Specimens Transported Across National Boundaries." Journal of Medical Ethics: The Journal of the Institute of Medical Ethics 33(1): 35-38.
"The researchers have the duty to inform the research participants about specimen storage and transport across national boundaries. While obtaining informed consent from study subjects if specimens are to be stored beyond the life of the present study could be the ideal, there still remains significant challenges in a multicultural world. (edited) ..."
"To what extent do the pressures of commercialism block or interfere with perceptions of fact and truth in establishing diagnosis, in projecting methods and strategies of treatment, and in assessing the medical, psychological, and moral needs of the individual patient? To this extent, it is not so much a question of physicians making intentional, self-serving decisions. It is a question of physicians unconsciously making such decisions based on perceptions and processes of judgment subconsciously or semiconsciously governed by the monetary considerations that have permeated nearly every corner and pocket of the contemporary culture. ..."
"The article presents the author's analysis about the anti-ageing approaches in cultures, biopolitics as well as in globalization through the context in cultural studies. It has been stressed that both the anti-ageing advocates as well as their agonists suggests the presence of common interests, shared assumptions and the overlapping of constituencies. Furthermore, the author emphasizes the role of ageing as a multidimensional process having multiple interlaced effects in all aspects. ..."
"The expressivist argument's allegation, as I have understood it, is that abortions so motivated send a message to people who are currently living with disabilities that is somehow insulting, hateful, dismissive, or disparaging. It is thus uncontroversial moral subjects who are wronged, not;or, at least, not necessarily; the aborted fetuses. So far as this argument goes, a person might hold strongly pro-choice views about abortion generally and still object to selective abortions. ..."
Newton, S. K. and J. Appiah-Poku (2007). "The Perspectives of Researchers on Obtaining Informed Consent in Developing Countries." Developing World Bioethics 7(1): 19-24.
" This study into IC was carried out to investigate how different researchers perceived the process whereby researchers obtained consent. It also examined researchers' perspectives on what constituted IC, and how different settings influenced the process. Conclusion: The ethical issues for IC were the same, irrespective of where the research was conducted. However, because the backgrounds, setting, and knowledge of populations differed, there was the need to be similarly sensitive in obtaining consent. The problems of obtaining genuine IC were not limited to developing countries. (edited) ..."
"The purpose of this study was to describe the consequences of diagnostic genetic testing and to compare the perceptions of adult patients/parents and personnel, to determine which factors were associated with the respondents' perceptions concerning the consequences of diagnostic genetic testing and to find out how the ethical principles manifest themselves in the consequences. The data were collected using a structured questionnaire from patients or parents (n = 106) and personnel (n = 162) during diagnostic genetic testing at three Finnish university hospitals. Both groups of respondents thought that the testing had more beneficial impacts on the patient's life control than on their family life and social life, and staff estimated that these impacts are less favourable than did patients/parents in all areas of life.
"As a result of the increasing effectiveness of cancer screening and preventive interventions, ethical issues, as well as legal liabilities, are increasingly associated with cancer genetic testing. These issues include the possible "duty to warn" relatives of inherited cancer risk, the appropriateness of testing of children and embryos, equity of access to genetics services, and potential harms of testing including the risk of genetic discrimination. An approach to these and other ethical challenges will be presented, drawing not only on recent case law but also on a broader bioethical framework. ..."
"Whereas clinical pharmacology originates as an experimental science, human disease genetics is primarily observational in nature. The result is a significant asymmetry in scientific method that can differentially impact the degree to which gene-environment interactions are discerned and, by extension, the study sample size required in each discipline. Importantly, the recognition that pharmacogenomics is an experimental science creates an avenue for systematic policy response to the ethical imperative to prospectively pursue genetically customized therapies before regulatory approval of pharmaceuticals. To this end, we discuss the critical role of interdisciplinary engagement between medical sciences, policy, and social science. . ..."
Palmie, S. (2007). "Genomics, divination, "racecraft."" American Ethnologist 34(2): 205-222.
"Arguing from the highly publicized case of the genomic "resolution" of the question of Thomas Jefferson's paternity of his slave Sally Hemings's children and from the emergence of commercial personal genomic history services targeting African American consumers, I seek to expose the epistemological and methodological problems inherent in biotechnologically driven "ancestry projects" (however oppositional and empowering they may be in certain cases). I also aim to show how the divinatory logic of applications of genomic technologies of knowledge production to the validation of modes of social identification replicates racial essentialisms such as U.S. ideologies of hypodescent in a manner oddly reminiscent of the "invisible essences" that, according to classic ethnographic descriptions, underlie systems of witchcraft detection. ..."
Panofsky, A. L. (2006). Fielding Controversy: The genesis and structure of behavior genetics. Sociology. New York, New York University. PhD: 459.
Parker, M., R. Ashcroft, et al. (2007). The Ethical Review of Research into Rare Genetic Disorders. Ethics in Biomedical Research: International Perspectives (Value Inquiry Book Series, Volume 186), Hayry, Matti: 87-95.
"In this article, we briefly summarize the ethical arguments raised in this debate, with a focus on the issues surrounding the more controversial form of life-extension research that would extend the human life span beyond the current maximum of 120 years. ..."
Payne, P. W., Jr. and C. Royal (2007). "The role of genetic and sociopolitical definitions of race in clinical trials." J Am Acad Orthop Surg 15 Suppl 1: S100-4.
"Three policy options exist for improving the National Institutes of Health Policy on Reporting Race and Ethnicity: (1) using genetic ancestry instead of census racial categories;(2) developing a standardized definition of race using current science; and(3) redefining minority group populations and subpopulations using social environment variables rather than census racial categories. ..."
"The authors of this paper argue that research with the explicit aim of extending the human lifespan is both undesirable and morally unacceptable. They present three serious objections, relating to justice, the community and the meaning of life. ..."
"Whereas in many instances the use of ethnic and religious categories as well as assumptions about the proclaimed homogeneity of populations in the context of biobanks have spurred discussions and public debates in other Western countries, these categories have not been problematized publicly in Israel. This paper argues that this is due to the important function of ethnicity, religious affiliation and family origin in structuring the public sphere.
Reardon, J. (2007). "Democratic Mis-haps: The Problem of Democratization in a Time of Biopolitics." BioSocieties 2(02): 239-256.
"This article examines the assertion that human embryonic stem cells patents are immoral because they violate human dignity. After analyzing the concept of human dignity and its role in bioethics debates, this article argues that patents on human embryos or totipotent embryonic stem cells violate human dignity, but that patents on pluripotent or multipotent stem cells do not. Since patents on pluripotent or multipotent stem cells may still threaten human dignity by encouraging people to treat embryos as property, patent agencies should carefully monitor and control these patents to ensure that patents are not inadvertently awarded on embryos or totipotent stem cells.</p> ..."
"We explore the ways science has been misused, the attempts to measure the pervasiveness of this problem, and the effects on our long-term capacity to meet today's most complex public health challenges. Good government and a functioning democracy require public policy decisions to be informed by independent science.The scientific and public health communities must speak out to defend taxpayer-funded science from political interference. Encouragingly, both the scientific community and Congress are exploring ways to restore scientific integrity to federal policymaking. ..."
Rogowski, W. (2007). "Current impact of gene technology on healthcare - A map of economic assessments." Health Policy 80(2): 340-357.
"This paper investigates how and to what extent these changes have been economically assessed. Economic evaluations of "healthcare consisting of gene technology" were identified primarily for in vitro diagnostics for hereditary disease and others for pharmacogenetics and molecular pathology. Hypotheses about the impact of gene technology on healthcare must be explicit about the definition of "genetic" medicine. A general statement regarding healthcare enabled by gene technology is not possible. Based on current evidence, an era of healthcare consisting of gene technology built on widespread predictive testing is not desirable from a health economic viewpoint. . ..."
Roth-Cline, M. D. (2006). Data and safety monitoring in clinical trials: An examination of selected ethical, legal, and policy dilemmas. School of Medicine and Public Health. Madison, University of Wisconsin--Madison. PhD: 256.
" This article, therefore, considers the impacts of participation by examining the UK Food Standards Agency's (FSA) Consumer Committee, which was created in 2002 to institutionalize consumer representation within policy making, but which was disbanded as a failure in 2005. Using three case studies, the article identifies two broad institutional dimensions of regulation that shaped and constrained the committee's impact on the evidence base, policy outcomes and building support for policy, and contributed to its eventual failure. Those dimensions relate to the design and organization of regulatory regimes, and to the understandings and influence of regulatory actors. ..."
Rothstein, W. G. and L. H. Phuong (2007). "Ethical attitudes of nurse, physician, and unaffiliated members of institutional review boards." Journal of Nursing Scholarship 39(1): 75-81.
"Purpose: To evaluate the recommendation for adding unaffiliated members to institutional review boards (IRB) by comparing the attitudes and influence of IRB members of different backgrounds, primarily nurses, physicians, and unaffiliated members. Nurses rated most of the issues as more important than did all other members; physicians rated most of the issues as less important than did all other members; and unaffiliated IRB members rated the issues similar to the whole. Nurses and unaffiliated members were ranked the least influential IRB members, and IRB chairs and physicians were ranked the most influential. Conclusions: The responses of the IRB members in this study indicate that adding more unaffiliated members to IRBs is unlikely to increase IRB concerns with ethical issues. Adding more nurse members to IRBs might increase IRB concerns with ethical issues if the level of influence of the nurses is increased. ..."
" This article argues that the political need to reconcile the promise of new health technologies with the cultural costs of scientific advance, dependent in this case on the use of the human embryo, has been met by the evolution of bioethics as a political community, transnational network, and bureaucratic device. Bioethics has become the political means for the creation of a global moral economy where the trading and exchange of values is normalized and legitimated. As a result of such trading, value compromises are produced capable of legitimizing the regulatory policies necessary for maintaining public trust in the new science.</p> ..."
Sanner, J. E. and L. Frazier (2007). "Factors that influence characteristics of genetic biobanks." Journal of Nursing Scholarship 39(1): 25-29.
"Purpose: To identify demographic differences between patients who choose participation and patients who choose nonparticipation in genetic biobanks, and to explore reasons for nonparticipation. Design: Prospective study of hospitalized cardiovascular patients approached to participate in a genetic biobank, 300 nonparticipants and 299 participants, in the southwestern US.
Conclusions: Minority and older adults were less likely to participate. Understanding reasons for nonparticipation in this group might aid in the development of methods used to obtain a diverse population in biobanks. ..."
Santosuosso, A., V. Sellaroli, et al. (2007). "What constitutional protection for freedom of scientific research?" Journal of Medical Ethics 33(6): 342-344.
"Is freedom of research protected at the constitutional level? No obvious answer can be given to this question, as European and Northern American constitutional systems are not unequivocal and the topic has not been discussed deeply enough. In the European and Northern American constitutional panorama, several levels of protection are given to freedom of science: At a first basic level, this freedom receives the same protection given to all other fundamental rights included in the genus of freedom of thought and expression; at a second level, we could find a specific and expressed constitutional recognition for such a fundamental freedom; and finally, at a possible third level, the State is engaged in promoting scientific research. ..."
Sayers, G. M. (2007). "Should research ethics committees be told how to think?" Journal of Medical Ethics 33(1): 39-42.
"Research ethics committees (RECs) are charged with providing an opinion on whether research proposals are ethical. These committees are overseen by a central office that acts for the Department of Health and hence the State. An advisory group has recently reported back to the Department of Health, recommending that it should deal with (excessive) inconsistency in the decisions made by different RECs. This article questions the desirability and feasibility of questing for consistent ethical decisions. ..."
"I briefly discuss three components of the media that play a role in the commercialization of medicine: advertising, television dramas, and journalism. ..."
Seavilleklein, V. and S. Sherwin (2007). "The Myth of the Gendered Chromosome: Sex Selection and the Social Interest." Cambridge Quarterly of Healthcare Ethics 16(1): 7-19.
"In this paper, we argue that sex selection technologies are problematic because they entrench and legitimize simplistic notions of sex and gender and the correlation between them. This conflation of biological categories of sex with social categories of gender obscures the reality of such phenomena as intersexuality, transsexuality, and homosexuality and, more generally, perpetuates harmful and pervasive stereotypes that attach to traditional conceptualizations of gender. Consequently, we argue that sex selection practices are so potentially harmful to the social interest that their prohibition by governments is justifiable. ..."
Shepherd, R., J. Barnett, et al. (2007). "Towards an understanding of British public attitudes concerning human cloning." Social Science & Medicine 65(2): 377-392.
"The present paper reports on a series of studies examining public attitudes to human cloning in the UK, bringing together a range of quantitative and qualitative methods to address this question. These included a nationally representative survey, an experimental vignette study, focus groups and analyses of media coverage. Overall the research presents a complex picture of attitude to and constructions of human cloning. In all of the analyses, therapeutic cloning was viewed more favourably than reproductive cloning. However, while participants in the focus groups were generally negative about both forms of cloning, and this was also reflected in the media analyses, quantitative results showed more positive responses. . ..."
Snyder, S. L. and D. T. Mitchell (2006). "Eugenics and the racial genome: politics at the molecular level." Patterns of Prejudice 40(4-5): 399-412.
"Snyder and Mitchell's essay charts parallels