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Center NewsCGREAL is now acceptinig applications for post-doctoral fellowships. The goal of the program is to train researchers whose work is focused on seeking answers to ethical, legal and social questions surrounding the design and conduct of human genetic research, and the development of sound ways to implement such answers in policy. Applications are due February 15, 2009. For more information, please contact Assistant Director Aaron Goldenberg.
OpportunitiesCall For Abstracts International Conference The aim of this conference is to explore some of the complex and challenging issues that are linked to the ethical, legal and social issues related to biobanking. The American Public Health Association (APHA) Genomics Forum makes a call for genomics-related abstracts (576KB) for the 137th APHA Annual Meeting & Expo to be held November 7-11, 2009, in Philadelphia, Pennsylvania. Deadline: February 10, 2009. For more information, contact Dean Hosgood hosgoodd@mail.nih.gov. The American Society for Bioethics and Humanities' 11th Annual Meeting is scheduled for October 15-18, 2009, in Washington, DC at the Hyatt Regency Capitol Hill. Scholars are invited to address the issues of translation in the medical humanities and bioethics. Conferences & Meetings
Practical Biobanking: an intensive course 8th IAS-STS Conference 2009 on "Critical Issues in Science and Technology Studies" International Conference First Annual Consumer Genetics Show Summer Institute in Public Health Genetics: Translating Genomics into Policy and Practice June 22-26, 2009 Seattle, Washington History of Genetics Conference
ResourcesCenters for Excellence in ELSI Research (CEER) Bibliographic database of audiovisuals, books, and articles, many of which are indexed using the Bioethics Thesaurus for Genetics.
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"));Genetics in the News
HIPAA privacy rule fails to adequately protect patient privacy and hampers health research "The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule does not adequately protect the privacy of people's personal health information and hinders important health research discoveries, concludes a new report from the Institute of Medicine. ..."
Neanderthal genome to be unveiled : Nature News "The entire genome of a 38,000-year-old Neanderthal has been sequenced by a team of scientists in Germany. The group is already extracting DNA from other ancient Neanderthal bones and hopes that the genomes will allow an unprecedented comparison between modern humans and their closest evolutionary relative. ..."
Doubt cast on worth of heart disease gene testing "A study tracking a large group of women for a decade casts doubt on the value of testing for a certain genetic trait linked to heart disease to predict one's chances of illness. ..."
BBC NEWS | Asian heart disease gene found "It is rare to find a gene which has such a big effect and is so common, the international team of scientists said. ..."
NIAAA to Fund Genetics of Alcoholism and Susceptibility Study | GenomeWeb "The National Institute on Alcoholism and Alcohol Abuse is seeking research into how genetic variants may be linked to alcohol dependence in adults and adolescents. ..."
Breast cancer is genetic "Women with a family history of breast cancer are four times more likely to develop breast cancer than other women – even if they don’t have high-risk genes, according to a new study. ..."
First IVF pregnancy after rapid egg screening : Nature News "A 41-old-woman is the first to become pregnant after undergoing a speedy new technique to screen her eggs. ..."
F.D.A. Approves Drug From Gene-Altered Goats - NYTimes.com "Opening the barn door to a new era in farming and pharmaceuticals, the Food and Drug Administration on Friday approved the first drug produced by livestock that have been given a human gene. ..."
NH Rep: DNA bill needs privacy safeguards - Corrections News "The legislator who scuttled a bill to collect DNA from felons last year has come out in favor of a similar proposal this year, if lawmakers build in certain privacy safeguards. ..."
Research Breakthrough: Human Clones May Be Genetically Viable | Wired Science from Wired.com "For the first time since Hwang Woo-Suk's cloned stem cells were revealed as fakes, human cloning — for medical purposes, or even for reproduction — appears to be a realistic possibility. ..."
Screen mothers for gene fault that could lead to child deafness, doctors urge - Telegraph "All pregnant women should be screened for a genetic fault that could mean their children risk deafness if given certain antibiotics, doctors have suggested. ..."
Eye on DNA Interview: Dr. Tzung-Fu Hsieh of RedTracer DNA Test for the Red Hair Gene, MC1R "The RedTracer DNA test will give customers 954 base pairs of the coding region of their MC1R gene. Our test will provide definitive information about carrier status and not simply the odds of being a carrier based on a certain SNP. ..."
Longevity Gene' Common Among People Living To 100 Years Old And Beyond "A variation in the gene FOXO3A has a positive effect on the life expectancy of humans, and is found much more often in people living to 100 and beyond – moreover, this appears to be true worldwide. ..."
Genetic Selection Opens New Doors For Fertility Clinics - Health - redOrbit "With the advances in genetic screening and fertility, the future of prospective parents being able to pick and choose what traits they want in their yet-to-be conceived children may not be too far away. But for biologists, such ideas beg many questions about ethics and evolution. ..."
Discovering Biology in a Digital World : Genetically modified humans are already here (and doing fine) "In January, researchers published the results of a long-term study (1) demonstrating that gene therapy increased the immune functioning in nine of the ten children with ADA deficiency, who were treated in the study. All ten children are alive in a median time of 4 years after treatment. Most promising, in five of the children, the normal immune functions have been restored. ...""
War Against the Weak "War Against the Weak is the untold story of American Eugenics, a movement that attempted to breed a Nordic master race through the elimination of the unfit'. ...
Genetics in the Literature
Mertens, D. M. and P. E. Ginsberg (2008). The Handbook of Social Research Ethics, SAGE Publications, Inc.
"The Handbook of Social Research Ethics is the first comprehensive volume of its kind to offer a deeper understanding of the history, theory, philosophy, and implementation of applied social research ethics. Editors Donna M. Mertens and Pauline Ginsberg bring together eminent, international scholars across the social and behavioral sciences and education to address the ethical issues that arise in the theory and practice of research within the technologically advancing and culturally complex world in which we live. In addition, this volume examines the ethical dilemmas that arise in the relationship between research practice and social justice issues. ..."
(2008). "Additional protocol to the convention on human rights and biomedicine, concerning genetic testing for health purposes." Law Hum Genome Rev(28): 219-42.
"There are those who argue that when reproduction or reproductive products exist outside of a woman's body each gamete donor should have an equal say over the fate of the embryo/fetus. Others, however, argue that giving an equal say to gamete donors in practice usually means allowing the male donor to veto the reproductive enterprise and this is unacceptable. As a result it has been suggested that women should be favoured when it comes to such reproductive choices. This paper examines both sides of this debate in order to answer the fundamental ethical and policy question: 'Is there any reason why women should necessarily retain control over reproduction rather than simply over their own bodies?' ..."
"Objectives To review ethical, ethnic/ancestral, and societal issues of genetic and genomic information and technologies in the context of racial and ethnic health disparities.Data Sources Research and journal articles, government reports, web sites.Conclusion As knowledge of human genetic variation and its link to diseases continues to grow, some see race and ethnicity well poised to serve as genetic surrogates in predicting disease etiology and treatment response. However, stereotyping and bias in clinical interactions can be barriers to effective treatment for racial and ethnic minority patients.Implications for Nursing Practice The nursing profession has a key role in assuring that genomic health care does not enhance racial and ethnic health inequities. This will require utilization of new genomic knowledge and caring for each patient as an individual in a culturally and clinically appropriate manner. ..."
Christian, B. Y. (2008). "Preimplantation genetic diagnosis: an ambiguous legal status for an ambiguous medical and social practice." Law Hum Genome Rev(28): 85-103.
"Preimplantation Genetic Diagnosis (PGD) is a technique that 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. In this paper the author analyse these matters. ..."
"Many social scientists and bioethicists have argued that genetic screening is a new form of eugenics. Examination of the development of the quasi-mandated screening program for beta-thalassemia in the Republic of Cyprus (1970-1984) demonstrates that there is nothing eugenic about modern genetic screening practices. The Cypriot screening program involves mandated premarital carrier screening, voluntary prenatal diagnosis (originally through fetoscopy, now through CVS), and voluntary termination of afflicted pregnancies - all at public expense. In the Republic of Cyprus, the mandating agency for genetic screening is the established church, so this examination also demonstrates that religious authorities with profound objections to abortion can balance that moral precept against others, such as the imperative to reduce suffering that sometimes conflict with it. . ..."
de Melo-Martin, I. (2008). "Chimeras and human dignity." Kennedy Inst Ethics J 18(4): 331-46.
"Discussions about whether new biomedical technologies threaten or violate human dignity are now common. Indeed, appeals to human dignity have played a central role in national and international debates about whether to allow particular kinds of biomedical investigations. The focus of this paper is on chimera research. I argue here that both those who claim that particular types of human-nonhuman chimera research threaten human dignity and those who argue that such threat does not exist fail to make their case. I first introduce some of the arguments that have been offered supporting the claim that the creation of certain sorts of chimeras threatens or violates human dignity. I next present opponents' assessments of such arguments. Finally I critically analyze both the critics' and the supporters' claims about whether chimera research threatens human dignity. ..."
"In this article we analyse existing legal frameworks in Europe by comparing the legal provisions in 2 European Countries which are member states of the Council of Europe, the UK and Switzerland. They were chosen because they have distinct legal frameworks that make comparisons interesting. In addition, the detailed laws of the UK and a specific law project and national ethical recommendations in Switzerland permit us to define more clearly the legal range of options for researchers using cadaveric material obtained during forensic investigations. The Human Tissue Act 2004 in England, Wales and Northern Ireland, its Scottish equivalent with the same title (2006) and the national ethical guidelines in Switzerland all require consent from the deceased person, an appropriate relative or a person with power of attorney for healthcare decisions before cadaveric biological material can be obtained and used for research. However, if the purpose of the autopsy is purely forensic, no such authorisation will be sought to carry out the autopsy and related analyses, which might include genetic testing. In order to be allowed to carry out future research projects, families need to be approached for informed consent, unless the deceased person had left written directives including permission to use his or her tissues for research. ..."
Gluck, J. P. and M. T. Holdsworth (2008). "FDA releases draft guidance on regulation of genetically engineered animals." Kennedy Inst Ethics J 18(4): 393-402.
"Background: Previous studies have identified evidence of genetic influence on alcohol use in samples selected to be informative for alcoholism research. However, there are a growing number of genome-wide association studies (GWAS) using samples unselected for alcohol consumption (i.e., selected on other traits and forms of psychopathology), which nevertheless assess consumption as a risk factor. Is it reasonable to expect that genes contributing to variation in alcohol consumption can be identified in such samples? The results suggest that GWAS assessing alcohol consumption as a covariate for other conditions will have some success in identifying genes contributing to consumption-related variation. However, sample characteristics, such as participant age, and trait distribution, may have substantial effects on the strength of the genetic signal. These results can inform forthcoming GWAS where the same restrictions apply. ..."
"Current notions of privacy protection may not offer adequate protection to persons in marginalized social groups because privacy protection is still predicated on an individual protection paradigm. Drawing on arguments advanced by privacy scholars on group privacy, and the application of the notion of group protection in data protection legislation, this article argues for incorporation of non-discrimination provisions in data protection laws and border control policy in order to enhance protection for those in marginalized social groups. It also purports that security and control of persons are both individual and group oriented and supports a similar group approach in privacy protection. ..."
"Parents of children with genetic conditions or impairments stand in a unique position with regard to choices and dilemmas posed by prenatal screening and testing options offered to at-risk parents as a means to a ‘healthy’ baby. This article reports the results of a qualitative study of parents whose children are clients of a state-wide rural genetic outreach programme in the US. The analysis seeks to connect the lived experience of parents of children with genetic conditions or impairments to choices with which women are confronted as prenatal testing technologies continue to proliferate. It reports the finding that a majority of parents in the study chose not to choose: avoiding future pregnancies, declining prenatal testing for subsequent pregnancies, or limiting testing to ‘for information only’. These decisions do not reflect simple rejection of medical intervention, opposition to abortion, and/or affirmation of a positive parenting experience with an affected child. Rather, choosing to avoid the condition of choice appears to be a strategy of responsible parenting that emerges from ambivalence towards the options presented by reproductive technologies. ..."
"Two of three humans never get cancer. Even the majority of heavy smokers remain cancer free. Is this a matter of chance, or are there cancer-resistant genotypes? Based on the evidence discussed, it would appear that evolution has favored a limited number of relatively common resistance genes that may nip incipient cancerous foci in the bud, i.e., to stop them at their inception. It is further suggested that resistance genes may act at the level of tissue organization in a dominant fashion. ..."
"The aim of this study was to assess potential consumers' attitudes and expectations toward psychiatric genetics and factors influencing their intentions to test. A questionnaire constructed to assess attitudes and intentions toward psychiatric genetic testing was mailed or given in person to individuals participating in different genetic studies aiming at identifying genes predisposing for mental illness. A total of 397 persons diagnosed with major depression, bipolar disorder, schizophrenia, or anxiety disorder participated in the survey. A large majority of the sample expressed an intention for themselves and their children to participate in psychiatric genetic testing. Support for prenatal testing was considerably less strong. A large minority expressed intention to test regardless of treatment possibilities. Intentions to test were positively associated with being a parent, trust in researchers, and expecting to feel better prepared for fighting the disorder when knowing of the presence of risk genes. Intentions were negatively associated with the fear of psychiatric genetic research bringing on too many difficult choices and fearing not to be able to cope with the results of a psychiatric genetic test. These results indicate that psychiatric genetic testing is not just perceived as a way to better treatment. Other expectations may motivate testing even though the clinical validity of the test is poor. ..."
"The recent debate on preimplantation genetic screening (PGS) has raised questions about its routine use in clinical practice. It has been suggested that the most effective way to resolve the debate about the usefulness of PGS is to perform more well-designed and well-executed randomized controlled trials (RCTs). However, in view of the lack of evidence for the effectiveness of PGS and the accumulating evidence for its harmfulness, it is our opinion that it is unethical to perform additional RCTs for the indication advanced maternal age using cleavage stage biopsy. ..."
McBride, C. M. and A. E. Guttmacher (2009). "Commentary: Trailblazing a Research Agenda at the Interface of Pediatrics and Genomic Discovery--a Commentary on the Psychological Aspects of Genomics and Child Health." J Pediatr Psychol.
"Unprecedented advances in human genome science are underway with potential to benefit public health. For example, it is estimated that within a decade, geneticists and epidemiologists will complete a catalog of the majority of genes associated with common chronic diseases. Such rapid advances create possibilities, if not the mandate, for translational research in how best to apply these and other anticipated discoveries for both individual and population health benefit. Driving these discoveries are rapid advances in infrastructure (e.g., the International HapMap Project to catalog human genetic variation; http://www.hapmap.org), analytical methods, and technology. This expansion in capabilities quickly has taken us from a genetics paradigm-where the influence of individual genes on health outcomes is paramount, to a genomics paradigm-where the complex influence of individual genes is considered in concert with each other and with environmental exposures on health outcomes. We discuss these and similar groundbreaking discoveries with an eye toward understanding their importance to child health and human development, and the role of behavioral science research conducted at the interface of pediatrics and genomic discovery. ..."
"Monoamine oxidase A gene (MAOA) has earned the nickname "warrior gene" because it has been linked to aggression in observational and survey-based studies. However, no controlled experimental studies have tested whether the warrior gene actually drives behavioral manifestations of these tendencies. We report an experiment, synthesizing work in psychology and behavioral economics, which demonstrates that aggression occurs with greater intensity and frequency as provocation is experimentally manipulated upwards, especially among low activity MAOA (MAOA-L) subjects. In this study, subjects paid to punish those they believed had taken money from them by administering varying amounts of unpleasantly hot (spicy) sauce to their opponent. There is some evidence of a main effect for genotype and some evidence for a gene by environment interaction, such that MAOA is less associated with the occurrence of aggression in a low provocation condition, but significantly predicts such behavior in a high provocation situation. This new evidence for genetic influences on aggression and punishment behavior complicates characterizations of humans as "altruistic" punishers and supports theories of cooperation that propose mixed strategies in the population. It also suggests important implications for the role of individual variance in genetic factors contributing to everyday behaviors and decisions. ..."
"In 2003, Ruth Faden and eighteen other colleagues argued that a "problem of unequal biological access" is likely to arise in access to therapies resulting from human embryonic stem cell research. They showed that unless deliberate steps are taken in the United States to ensure that the human embryonic stem cell lines available to researchers mirrors the genetic diversity of the general population, white Americans will likely receive the benefits of these therapies to the relative exclusion of minority ethnic groups.Over the past five years the problem of unequal biological access has not received much attention from politicians, bioethicists and even many researchers in the United States, in spite of the widely held belief in the country that there is an obligation to prevent and correct ethnic disparities in access to medical care. The purpose of this paper is to increase awareness of the problem of unequal biological access and of the need to do more than is currently being done to ensure that ethnic disparities in access to human embryonic stem cell-based therapies do not arise.Specifically, this paper explains why the problem of unequal biological access will likely arise in the United States in such a way that white Americans will disproportionately receive most of the benefits of the therapies resulting from human embryonic stem cell research. It also argues for why there is an obligation to prevent these ethnic disparities in access from happening and outlines four steps that need to be taken towards meeting this obligation. ..."
Nakajima, K. (2009). "From Ethnic Difference to Ethnic Similarity." YAKUGAKU ZASSHI 129(2): 223-229.
"In order to give grounds for the validity of carrying out clinical trial in the same protocol in East Asia countries, it may be useful to examine genetic diversity of East Asia countries with plural heredity anthropological techniques such as heredity distance, and compare degree of the genetic diversity between the races of East Asia countries and that of other regions, for example, West Europe countries which have been recognized as one clinical trial field. ..."
Park, Wan B., Pyoeng G. Choe, et al. (2009). "Should HLA-B*5701 Screening Be Performed in Every Ethnic Group before Starting Abacavir?" Clinical Infectious Diseases 48(3): 365-367.
Renfrew, C. (2009). "ANTHROPOLOGY: Where Bacteria and Languages Concur." Science 323(5913): 467-468.
Schwartz, P. H. (2007). "Silence about Screening." American Journal of Bioethics 7: 46-48.h
"Screening programs for genetic diseases and characteristics have multiplied in the last 50 years. 'Genetic Screening: Programs, Principles, and Research' is the report of the Committee for the Study of Inborn Errors of Metabolism (SIEM Committee) commissioned by the Division of Medical Sciences of the National Research Council at the National Academy of Sciences in Washington, DC, published in 1975. The report is considered a classic in the field worldwide, therefore it was thought appropriate 30 years later to present the Committee's modus operandi and bring the Committee's recommendations to the attention of those involved in genetics, including organizational, educational, legal, and research aspects of genetic screening. The Committee's report anticipated many of the legal, ethical, economic, social, medical, and policy aspects of genetic screening. The recommendations are current, and future committees should be familiar with them. In 1975 the Committee stated: 'As new screening tests are devised, they should be carefully reviewed. If the experimental rate of discovery of new genetic characteristics means an accelerating rate of appearance of new screening tests, now is the time to develop the medical and social apparatus to accommodate what later on may otherwise turn out to be unmanageable growth.' What a prophetic statement that was. If the Committee's recommendations had been implemented on time, there would be today a federal agency in existence, responsive and responsible to carry out the programs and support research on various aspects of genetic screening, including implementation of a federal law that protects consumers from discrimination by their employers and the insurance industry on the basis of genetic information. ..."
Stern, D. L. and V. Orgogozo (2009). "Is genetic evolution predictable?" Science 323(5915): 746-51.
"Ever since the integration of Mendelian genetics into evolutionary biology in the early 20th century, evolutionary geneticists have for the most part treated genes and mutations as generic entities. However, recent observations indicate that all genes are not equal in the eyes of evolution. Evolutionarily relevant mutations tend to accumulate in hotspot genes and at specific positions within genes. Genetic evolution is constrained by gene function, the structure of genetic networks, and population biology. The genetic basis of evolution may be predictable to some extent, and further understanding of this predictability requires incorporation of the specific functions and characteristics of genes into evolutionary theory. ..."
"In this article the scope and contents of informed consent for cell donation in tissue engineering are discussed. We evaluate the various values donors may attach to cells and that may influence their decision to donate. Awareness of the various meanings of the value of the cells is therefore essential for all involved in cell transfer. We discuss four types of value: biological, relational, material and informational value and discuss their relevance for collection, for the relationships that are established between donor and cell collector and for informed consent procedures. The actual setting of cell donation and the contents of informed consent can either maintain or disrupt these relationships. While one can exclude donors from any further say in the destination of their cells and from any financial return, one cannot exclude them from a persistent interest in the genetic information of the cells. ..."
"BackgroundAlthough genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. Objectives(1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general as described in the literature. MethodA modified Delphi study in two rounds ResultsGenetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as "confidentiality of genetic information" and "implications of research for relatives" which changes the impact and application of existing ethical topics such as "informed consent" and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found. ConclusionsDifferent priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics. ..."
"Institute of Medicine s Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that, as currently implemented, it impedes important health research. The committee recommends an entirely new approach to protecting privacy in health research. ..."
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