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Genetics in the News
NEWBORN BLOOD COLLECTIONS: Science Gold Mine, Ethical Minefield (Science) "Health agencies launched a system 40 years ago to identify babies at risk. Now there are millions of blood samples in files that researchers want to access, raising public concern ..."
Women may not keep own stem cells - Times Online "SOME NHS hospitals are banning mothers from collecting umbilical cord blood from their babies to use as a possible source for their future medical treatment. ..."
Nature v nurture? Please don't ask - Times Online "The question has fuelled some of history's fiercest scientific and political feuds. Now we have an answer ..."
genome.gov | Genetics and Genomics for Health Professionals "NIH's National Human Genome Research Institute launches a new web site with reliable information related to patient management, curricular resources, ELSI issues, and more. ..."
Synthetic biology: The next biotech revolution is brewing "The safety of early applications of synthetic biology may be adequately addressed by the existing regulatory framework for biotechnology. But further advances in this emerging field are likely to create significant challenges for U.S. government oversight ..."
Personalized cancer therapy gets closer : Nature News "Genetic testing allows doctors to select best treatment. ..."
Veterans likely to support genomic research at VA"A majority of veterans who receive health care through the Department of Veterans Affairs (VA) would likely support and participate in a proposed large-cohort genetic study at the VA. ..."
Icelandic Geneticists Still in Financial Chill : ScienceInsider "DeCODE Genetics, the Icelandic company that made a name for itself with its personalized medicine work before running into a financial mud pit, tried to be optimistic today about its future. Right now it only has enough money to survive into the summer. ..."
DNA Test Outperforms Pap Smear - NYTimes.com "A new DNA test for the virus that causes cervical cancer does so much better than current methods that some gynecologists hope it will eventually replace the Pap smear in wealthy countries and cruder tests in poor ones. ..."
Policies regarding IRB members' industry relationships often lacking "Boards overseeing clinical studies don't always require members to disclose potential conflicts ..."
CQ Politics | Futurist: Genes Without Borders "BBut the subject of this hearing was a different sort of arms race: the diplomatic and security implications of the spread of “genetics and other human-modification technologies.” ..."
Super Strong Kids May Hold Genetic Secrets - ABC News"Rare Cases of a Genetic Mutation Could One Day Lead to Muscle-Building Drugs ..."
Study finds researchers open to knowledge transfer ""We debunked the myth that researchers are so consumed by their work that they don't have time for knowledge transfer" ..."
(Trends & Perspectives) EGAPP findings add fuel to debate over genetic tests (IVDT archive Apr 09) "New reports by an independent working group supported by CDC add fuel to the debate over the benefits of and need for further scrutiny of the hundreds of genetic tests that have been developed in recent years for use in treating cancer patients. ..."
Genetic embryo screening: Questions grow along with number of procedures "Karin Cohn carries a genetic defect that led a half-dozen members of her family to develop early breast or ovarian cancer. She firmly supports allowing families like hers to screen embryos for the defect to ensure no future generations carry it. ..."
SCIENCEINSIDER: From the Science Policy Blog "A federal appeals court in Washington, D.C., last week ruled that the sequence of DNA obtained from a known protein is obvious and therefore unpatentable. The decision is the latest blow to gene patents, which are facing increased scrutiny. ..."
Human Subjects Research: Undercover Tests Show the Institutional Review Board System Is Vulnerable to Unethical Manipulation "GAO: The IRB system is vulnerable to unethical manipulation, which elevates the risk that experimental products are approved for human subject tests without full and appropriate review. GAO investigators created fictitious companies, used counterfeit documents, and invented a fictitious medical device to investigate three key aspects of the IRB system. ..."
DNA scan 'could cut cost of insurance - even if results kept secret - Times Online "Taking genetic tests to assess potential health risks could mean cheaper medical insurance even if the results are not disclosed, a senior industry executive has told The Times. ..."
On Being a Scientist: A Guide to Responsible Conduct in Research, third edition "It offers researchers -- especially early-career scientists and their mentors -- guidance on the ethical conduct of scientific research. ..."
NY State Regulates DTC Genetic Testing Labs - GLG News "The State of New York's decision to regulate direct to consumer (DTC) companies that provide genetic testing services is yet another example of increased in regulatory genetic test oversight. . ..."
Police will be banned from keeping DNA of innocent people, pledge Tories - Telegraph "Police will be banned from keeping the DNA profiles of innocent people under plans announced by the Conservatives today. ..."
Law.com - Sperm Banks Can Be Sued Under Product Liability Laws, Federal Judge Rules "In the first decision of its kind, a federal judge has ruled that a sperm bank may be sued under product liability laws for failing to detect that a sperm donor had a genetic defect. ..."
OBA - REQUEST FOR PUBLIC COMMENT "The Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) requests public comment on draft report on gene patents and licensing practices and their impact on patient access to genetic tests. ..."
Genetics in the Literature
(2009). "By common consent." Nature 458(7235): 125-125.
"Engaging with the public helped US scientists build the consensus that finally overturned federal restrictions on human embryonic stem-cell research. That public outreach should not stop now. ..."
"This article examines a key ethical concern that has arisen in the work of the international research consortium GenoMEL (http://www.genomel.org) and that has relevance to all genetic research in humans. The question is whether it is ethical to deny research participants the opportunity to receive individualised genetic results obtained from the biological samples they provide. Where those results are of clinical importance, a "respect for persons" requirement would make the offering of those results imperative. However, where those results are of uncertain clinical value, the picture is less clear. This paper argues that researchers may not be ethically obliged to offer such results to their participants, because of competing ethical demands. ..."
Auffray, C. (2009). "Sharing knowledge: a new frontier for public-private partnerships in medicine." Genome Med 1: 29.
"To help overcome the bottlenecks that limit the development of diagnostic and therapeutic products, academic and industrial researchers, patient organizations and charities, and regulatory and funding institutions should redefine the basis for sharing the knowledge collected in large-scale clinical and experimental studies. ..."
"Recent discussions of genetic enhancement have argued that unregulated access to genetic enhancement technology will have a mainly negative impact on equality, a development that an egalitarian approach to distributive justice should be concerned with and seek to address. I argue that the extent to which egalitarians should be concerned about unequal access to genetic enhancement therapies has been overplayed. Many of the genetic differences that exist between people, including those that arise from differential access to genetic enhancement technology, are simply irrelevant to egalitarian concerns. I also argue that most commentators have failed to appreciate that an egalitarian-inspired program of equal access to genetic enhancement technology may not be altogether favourable for the genetically disadvantaged in any case. The true implications of egalitarian justice in the genetic future have not been adequately explored. ..."
"Composed of scientific and technical experts and lay members, thousands of research ethics committees—Institutional Review Boards (IRBs) in the United States—must identify and assess the potential risks to human research subjects, and balance those risks against the potential benefits of the research. IRBs handle risk and its uncertainty by adopting a version of the precautionary principle. To assess scientific merit, IRBs use a tacit ``sanguinity principle,'' which treats uncertainty as inevitable, even desirable, in scientific progress. In balancing human subjects risks and scientific benefits, IRBs use uncertainty as a boundary-ordering device that allows the mediation of the science and ethics aspects of their decisions. One effect is the entangling of methodological and ethical review. Some have suggested these should be more clearly separated, but decisions by research ethics committees depend in part on the negotiating space created by incommensurable approaches to uncertainty. ..."
"Previous work has suggested that the serotonergic system plays a key role in "popularity" or likeability. A polymorphism within the 5HT<sub>2A</sub> serotonin receptor gene (-G1438A) has also been associated with popularity, suggesting that genes may predispose individuals to particular social experiences. However, because genes cannot code directly for others' reactions, any legitimate association should be mediated via the individual's behavior (i.e., genes 3 behaviors 3 social consequences), a phenomenon referred to as an evocative gene-environment correlation (rGE). The current study aimed to identify one such mediating behavior. The author focused on rule breaking given its prior links to both the serotonergic system and to increased popularity during adolescence. Two samples of previously unacquainted late-adolescent boys completed a peer-based interaction paradigm designed to assess their popularity. Analyses revealed that rule breaking partially mediated the genetic effect on popularity, thereby furthering our understanding of the biological mechanisms that underlie popularity. Moreover, the present results represent the first meaningfully explicated evidence that genes predispose individuals not only to particular behaviors but also to the social consequences of those behaviors. ..."
Byk, C. (2008). "Preimplantation genetic diagnosis: an ambiguous legal status for an ambiguous medical and social practice." J Int Bioethique. 19(3): 87-104, 125.
"The controversy about to which extend PGD may be applies is particularly interesting because it stresses on a paradoxical point concerning PGD. Although this technique is strictly regulated in most European countries where it is regularly practised, the legal status of PGD may appear to some as unethical because it may be viewed as a facilitator for those who would like to select children for reason other than medical. The need to test human embryos before birth and the consequences that may occur to those detected with some abnormalities also revives the issue of the respect due to the human embryo. ..."
Caulfield, T., S. M. Fullerton, et al. (2009). "Race and ancestry in biomedical research: exploring the challenges." Genome Med. 1(1): 8.
"The use of race in biomedical research has, for decades, been a source of social controversy. However, recent events, such as the adoption of racially targeted pharmaceuticals, have raised the profile of the race issue. In addition, we are entering an era in which genomic research is increasingly focused on the nature and extent of human genetic variation, often examined by population, which leads to heightened potential for misunderstandings or misuse of terms concerning genetic variation and race. Here, we draw together the perspectives of participants in a recent interdisciplinary workshop on ancestry and health in medicine in order to explore the use of race in research issue from the vantage point of a variety of disciplines. We review the nature of the race controversy in the context of biomedical research and highlight several challenges to policy action, including restrictions resulting from commercial or regulatory considerations, the difficulty in presenting precise terminology in the media, and drifting or ambiguous definitions of key terms. ..."
"My purpose in this paper is to uncover how IRBs are perceived and interpreted by researchers. While there is nearly universal agreement that research subjects have rights that should be respected the mechanisms by which this is accomplished are not as undisputed among researchers as most IRBs would like to think. In fact, as I discovered, there often exists a wide gulf between individual and small group beliefs in how human subjects protections should be determined, and how the IRB factors into these beliefs. ..."
"Since the beginnings of time humans have searched for a fountain of youth. This has led to many extravagant claims which have been highly profitable for their proponents. This area has become known as anti-aging medicine and has deservedly been frowned upon by the medical establishment. On the other hand, in the last decades dramatic advances in our understanding of the aging process have come from studies in worms, flies and mice. This article reviews some of these advances and places the extravagant claims of anti-aging medicine in perspective. We conclude that a balanced diet of moderate proportions and exercise remain today the only proven fountain of youth. ..."
"In this paper I argue that the account of deliberative democracy advanced by Amy Gutmann and Dennis Thompson (1996, 2004) is a useful normative theory that can help enhance our deliberations about public policy in morally pluralistic societies. More specifically, I illustrate how the prescriptions of deliberative democracy can be applied to the issue of regulating non-medical uses of pre-implantation genetic diagnosis (PGD), such as gender selection. Deliberative democracy does not aim to win a philosophical debate among rival first-order theories, such as libertarianism, egalitarianism or feminism. Rather, it advances a second-order analysis that strives to help us determine what would constitute a reasonable balance between the conflicting fundamental values that arise in the context of regulating PGD. I outline a theoretical model (called the Reasonable Genetic Intervention Model) that brings these issues to the fore. Such a model incorporates the concern for both procedural and substantive principles; and it does so in way that takes provisionality seriously. ..."
Fleeman, N. and R. Dickson (2009). "Providing patients with information on pharmacogenetic testing." Nurs Stand. 23(21): 46-8.
"This article outlines the key issues to be considered before recommending the use of pharmacogenetic tests, which may predict a patient's response to a particular drug. ..."
"To provide some structure for its activities, the Forum has set up several 'workstreams' that draw on broad themes featured in the research of the other EGN centres. These include workstreams on both plant genomics and synthetic biology, which I discuss in some detail below, as well as workstreams with themes such as genomics and biosecurity, genomics and intellectual property, and a series of interdisciplinary activities on stem cells. These Forum-led initiatives attempt to synthesize and integrate EGN research with the thinking and activities of other communities. Of course, it should be said that as well as running workstreams and organizing events, Forum staff also participate widely in externally organized activities including workshops, consultation exercises and citizens' inquiries, task forces, and educational initiatives at both secondary school and university levels. ..."
"Although gene patents might not be as menacing as some geneticists have suggested, government and health-care systems can no longer afford to ignore patents on genetic inventions. Their current approach might be perceived as hypocritical. Governments continue to promote patenting as a means to improve the return on investment in scientific research, and hospital labs operate increasingly like businesses by charging for their services. ..."
"Pharmacogenomics studies the relationship between genetic variation and the variation in drug response phenotypes. The field is rapidly gaining importance: it promises drugs targeted to particular subpopulations based on genetic background. The pharmacogenomics literature has expanded rapidly, but is dispersed in many journals. It is challenging, therefore, to identify important associations between drugs and molecular entities--particularly genes and gene variants, and thus these critical connections are often lost. Text mining techniques can allow us to convert the free-style text to a computable, searchable format in which pharmacogenomic concepts (such as genes, drugs, polymorphisms, and diseases) are identified, and important links between these concepts are recorded. Availability of full text articles as input into text mining engines is key, as literature abstracts often do not contain sufficient information to identify these pharmacogenomic associations. ..."
"Direct-to-consumer (DTC) BRCA testing may expand access to genetic testing and enhance cancer prevention efforts. It is not known, however, if current DTC websites provide adequate risk information for informed medical decision making. Methods: A total of 284 women with a personal or family history of breast/ovarian cancer were randomly assigned to view a "mock" DTC commercial website [control condition (CC); n = 93] or the same "mock" website that included information on the potential risks of obtaining genetic testing online. Results: The sample was 82% white, had a mean age of 39 years (range, 18-70 years) and had a mean education of 3 years of college. Women exposed to risk information had lower intentions to get BRCA testing than women in the CC [adjusted odds ratio (OR), 0.48; 95% confidence interval (95% CI) 0.26-0.87; P = 0.016], and less positive beliefs about online BRCA testing (adjusted OR, 0.48; 95% CI, 0.27-0.86; P = 0.014). Women in the ES condition were more likely to prefer clinic-based testing than were women in the CC (adjusted OR, 2.05; 95% CI, 1.07-3.90; P = 0.030). Conclusion: Exposing women to information on the potential risks of online BRCA testing altered their intentions, beliefs, and preferences for BRCA testing. Policy makers may want to consider the content and framing of risk information on DTC websites as they formulate regulation for this rapidly growing industry. ..."
Gurwitz, D. and J. E. Lunshof (2009). "Ancestry in translational genomic medicine: handle with care." Genome Med. 1(2): 24.
"Disparities in health outcomes of members of different ancestral or ethnic groups can be observed in both developed and developing countries and continue to be a global concern. Genomic medicine can help toward closing this gap by expanding the knowledge on novel alleles related to disease risk and drug response, their frequencies, and their relation with disease and drug-response phenotypes, in as many countries and ethnic groups as possible. Without such knowledge, genomic medicine cannot deliver upon its promise of contributing to health for all. However, the use of ancestry or ethnicity-related genetic information as a selection criterion for assigning varying levels of access to health care is condemnable. Translational genomic medicine will allow for individualized clinical decision making - doing away with the use of race, ethnicity or ancestry as a proxy. ..."
"The relationship between clinical research and clinical care is often perceived as unclear, particularly in highly technological subspecialties. This ambiguity is illustrated in cancer genetics where research protocols are frequently used to provide access to procedures that may be offered as a clinical service in other specialties. The project on which this paper is based investigated lay and expert perceptions of the activities which take place within the cancer genetics clinic. Semi-structured interviews were conducted with 40 individuals who are involved in cancer genetics research in the UK, the majority (18 clinical geneticists, 10 genetic counsellors/nurse specialists) of whom also provide a clinical service. Interviewees emphasised the need to differentiate research from clinical care for service users, and provided regulatory, ethical, economic and translational justifications for distinguishing these activities. A number of strategies for differentiating research from clinical care were described by those who work as healthcare professionals, which involved deliberately displacing these activities in time and space. It is argued that by distinguishing research from clinical care clinical researchers are engaging in a form of boundary work which enables them to manage what they experience as a conflict of interest generated by the different roles they occupy within the cancer genetics clinic. Finally, we discuss the implications of these findings for the process of informed consent. ..."
"This paper describes the variety of ways that information about ethics-related methods are included or not included in public health research articles. MethodsInformation about the ethics-related content of all articles published in nine highly-respected public health journals in 2006 was extracted. ResultsOf 989 primary analyses, 73% of the articles commented on ethics committee approval or exemption, 63% mentioned participant consent and 9% indicated whether or not inducement or compensation was given. 84% of articles mentioned a funding source, but fewer than 4% identified any potential conflict of interest. Reporting rates for committee review and consent were higher for experimental than for observational studies and were comparatively higher in studies conducted among potentially vulnerable populations like children and residents of low income countries. ConclusionsMore complete reporting would facilitate the design, evaluation and comparison of future research studies. ..."
"A study found that women participating in mammography screening were content with the programme and the paternalistic invitations that directly encourage participation and include a pre-specified time of appointment. We argue that this merely reflects that the information presented to the invited women is seriously biased in favour of participation. Women are not informed about the major harms of screening, and the decision to attend has already been made for them by a public authority. This short-circuits informed decision-making and the legislation on informed consent, and violates the autonomy of the women. Screening invitations must present both benefits and harms in a balanced fashion, and should offer, not encourage, participation. It should be stated clearly that the choice not to participate is as sensible as the choice to do so. To allow this to happen, the responsibility for the screening programmes must be separated from the responsibility for the information material. ..."
"Biobanks have been developed as a tool to better understand the genetic basis of disease by linking DNA samples to corresponding medical information. The broad scope of such projects presents a challenge to informed consent and participant understanding. To address this, 200 telephone interviews were conducted with participants in the NUgene Project, Northwestern University's biobank. Interviews included a modified version of the ldquoquality of informed consent measurerdquo (QuIC) and semi-structured questions which were analyzed thematically for 109 of the interviews. The QuIC, originally applied to cancer clinical trials, objectively assessed some of the components of informed consent for a biobank, and interview questions provided rich data to assist in interpreting participant understanding. The best understood domains included: the nature of the study, benefit to future patients, and the voluntary nature of participation. Lower knowledge scores included: potential risks and discomforts, experimental nature of the research, procedures in the event of study-related injury, and confidentiality issues. Qualitatively, confidentiality protections of the study were described as good by most (>50%). Although some cited concerns with employer (12%) or insurance discrimination (25%), most considered the risks to privacy low (25%) or none (sim60%). Only 10% of participants explicitly stated they had no expectation for personal benefit, and when asked whether they expected to be contacted with study results, respondents were split between having no expectation (39%), being hopeful for results (37%) and expecting to be contacted with results (12%). These findings are informative to those establishing and implementing biobanks, and to the IRBs reviewing such studies. . ..."
Kaufman, D., J. Murphy, et al. (2009). "Veterans' attitudes regarding a database for genomic research." Genet Med 2: 2.
"PURPOSE:: Large cohort studies to investigate interactions between genes, environment, and lifestyle require large representative samples of the population. The Department of Veterans Affairs health care system is uniquely positioned to carry out such research, with a large patient population and a sophisticated system of electronic medical records. As the Veterans Affairs considers establishing a large database of genetic information and medical records for research purposes, a survey of 931 Veterans Affairs patients was carried out to measure their willingness to participate, what their concerns would be, and their preferences about some aspects of study design. METHODS:: A sample of veterans who receive Veterans Affairs health care was surveyed online in April and May of 2008. The proposed genomic study was described to respondents, who then were asked about their support for the study and willingness to participate, and their opinions about the study and some of its components. A descriptive analysis examined differences in attitudes among demographic groups, and whether general beliefs were associated with support or willingness to participate. RESULTS:: Most respondents (83%) said the database should definitely or probably be created, and overall, 71% said they would definitely or probably participate. CONCLUSION:: Majorities of Veterans Affairs health patients in a broad range of demographic groups supported the establishment of a genomic database and showed willingness to participate. Although the desire to learn about one's own health from the study was high, altruistic characteristics were strongly related to whether or not veterans would participate. ..."
Kling, J. (2009). "First US approval for a transgenic animal drug." Nat Biotech 27(4): 302-304.
"The animal biotech sector reached a landmark in February when the US Food and Drug Administration (FDA) announced the approval of ATryn, an anticoagulant protein derived from the milk of transgenic goats ..."
Nathan, D. G. and S. H. Orki (2009). "Musings on genome medicine: the Obama effect." Genome Med 1: 30.
"The inauguration of the Obama administration is likely to enhance the role of genome medicine in clinical care and national economics. ..."
"As part of a pilot project called 'The DNA-Dialogues', we organized online discussions in collaboration with the editors of a popular magazine in The Netherlands, and specifically invited experts in genomics or science policy to take part. In this article, we describe the interactions between experts and the public during two online discussions that took place on the discussion board of Ouders Online (Parents Online), a popular Dutch online magazine about parenting. ..."
Rafi, I., N. Qureshi, et al. (2009). "'Over-the-counter' genetic testing: what does it really mean for primary care?" Br J Gen Pract. 59(561): 283-7.
"The publication of More Genes Direct by the Human Genetics Commission is a timely reminder of the potential impact that 'over-the-counter' genetic testing (that is, a direct genetic test without the need for a medical referral) may have on the NHS. This article considers the relevance of current genetic research on complex common diseases and how this might translate into risk estimates for developing conditions such as dementia, cancer, and cardiovascular disease. The implications for primary care include the need to understand the current limitations of genetic testing and its commercial application over the counter, and the importance of continuing to make risk assessments using family history. The authors recommend caution in the premature introduction of over-the-counter testing without a sound evidence base. ..."
"Drawing on empirical research with pregnant women and their male partners in a northern city in the UK, this paper aims to explore the gendered nature of genetic responsibility in prenatal blood screening. The paper will argue that women and men feel a sense of genetic responsibility for the fetus throughout screening. However, while women's sense of responsibility is directly ‘embodied’ and is heightened by the detection of ‘faulty genes’, men's manifests itself indirectly through shared responsibility with their pregnant partners and directly through their own genetic connections to the fetus. The paper concludes that the gendered nature of genetic responsibility is complex and contradictory, producing a set of gender roles that both challenges and reinforces a traditional gender division of labour. version of the material for the full abstract. ..."
Rimbach, G. and A. M. Minihane (2009). "Nutrigenetics and personalised nutrition: how far have we progressed and are we likely to get there?" Proc Nutr Soc 27: 1-11.
"Nutrigenetics and personalised nutrition are components of the concept that in the future genotyping will be used as a means of defining dietary recommendations to suit the individual. Over the last two decades there has been an explosion of research in this area, with often conflicting findings reported in the literature. Reviews of the literature in the area of apoE genotype and cardiovascular health, apoA5 genotype and postprandial lipaemia and perilipin and adiposity are used to demonstrate the complexities of genotype-phenotype associations and the aetiology of apparent between-study inconsistencies in the significance and size of effects. Furthermore, genetic research currently often takes a very reductionist approach, examining the interactions between individual genotypes and individual disease biomarkers and how they are modified by isolated dietary components or foods. Each individual possesses potentially hundreds of 'at-risk' gene variants and consumes a highly-complex diet. In order for nutrigenetics to become a useful public health tool, there is a great need to use mathematical and bioinformatic tools to develop strategies to examine the combined impact of multiple gene variants on a range of health outcomes and establish how these associations can be modified using combined dietary strategies. ..."
"This paper explores factors that impede or facilitate the sharing of genetic information within a sample of British Pakistani families. It draws from research investigating understandings of genetics and inheritance, attitudes to prenatal diagnosis and risk communication in the family that used methods of participant observation and interview with adults from 66 families of Pakistani origin referred to a genetics clinic in southern England. We found a lack of English often restricted one partner's access to genetic information and partners fluent in English sometimes withheld information to protect a partner (usually the wife) from blame, stigma or feelings of marital insecurity. Many couples felt genetic information was private to them as a couple and were unwilling to share it with the wider family, commenting on its potentially stigmatizing and emotionally and socially disruptive effects on themselves, their child and their marriage, as well as on the marriage prospects of other family members. Those who sought carrier testing because of a family history did so when considering their own marriage or parenting, sometimes on the insistence of an affected relative, but did not readily discuss carrier testing with other relatives. Despite the complex consanguinity in some families, a family-based approach to risk management is not necessarily any easier among British Pakistanis than other ethnic groups.) ..."
"Drawing on interviews and observational work with practicing U.K. plant scientists, this article uses Michel Callon's work as a tool to explore the issue of collaboration between academic science and business, in particular, calls by the Biotechnology and Biological Sciences Research Council for a return to public good plant science. Callon contributed to the debate about the commercialization of science by suggesting that commercialization and the public good need not be incompatible. Moving away from arguments that center on the effects (positive or negative) of business involvement in science, he suggested that analysts use another model, centered on “diversity.” This model allows us to ask what society might want from science, what public good science might look like, and how public good science can be ensured while also recognizing that science cannot be easily separated from the market ..."
Tervo, R. C. and P. Wojda (2009). "The Principle of Double Effect, Genetic Testing, and Global Developmental Delay." J Child Neurol 24: 24.
"Well-intended efforts to diagnose a child's developmental delay may have unintended negative consequences for a child and his family. Consequently, clinicians may feel caught in a moral dilemma: between doing the good they seek and avoiding the harm they foresee. The dilemma is that when investigating global developmental delay it is not possible to avoid all the anticipated negative outcomes of genetic testing and concurrently fulfill our obligations to do the good from which these harmful effects result. It is imperative to recognize dilemmas especially where the moral questions or relevant facts are not as clear cut as in ethics textbooks and to bring their moral questions into a structured dialogue with the patient and his or her family. A modified principle of double effect is a useful method for deliberating about these moral cases. Three case examples illustrate the utility of the principle of double effect when investigating global developmental delay. ..."
"Metagenomic analysis of gastrointestinal bacteria sheds light on obesity. ..."
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