This Week in CGREAL This Week in CGREAL Home * Genetics in the News * Genetics in the Literature * Archive
Center NewsWorks-in-Progress Seminar: Thinking Inside the Box: Inquiring into Intrinsic Value
Opportunities President’s Council on Bioethics Call for Papers: Conference on Empirical Legal Studies July 1, 2007 Genetics Perspectives on Policy Seminar (GenePOPS):
Who Owns Your Genes? Intellectual Property and the Human Genome
National Press Club PRIM&R Webinar: Protocol Review in the New Era of Genetics July 16, 2007 1:00-2:30 PM 12th Annual Genetics & Ethics Conference: DNA Identification and the Law: New Horizens and Outer Limits Genetic Alliance - 2007 Conference Eyes on the Prize: Truth Telling about Genetic Testing One Origin, One Race, One Earth: Genetics, Human Rights and the Next Phase of Human Evolution Netherlands Genomics Initiative: Genomics Momentum 2007 Call for Abstracts - 2007 Annual HRPP Conference | PRIM&R SACGHS - public comments " The Secretary s Advisory Committee on Genetics, Health, and Society is requesting public comment on a draft report, Realizing the Promise of Pharmacogenomics: Opportunities and Challenges. ..." Please contact Eric Juengst if you are submitting an abstract or are interested in a coordinated CGREAL submission. ResourcesIntensive Introduction to NVIVO 7 in Boston 16-17 July 2007
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Genetics in the News
Genotype and Phenotype Data Now Available from dbGaP Database "Researchers may now begin requesting individual-level genotype and phenotype data from dbGaP, the database of Genotype and Phenotype. The database, which was developed and is operated by the National Library of Medicine s National Center for Biotechnology Information (NCBI), archives and distributes data from studies that have investigated the relationship between phenotype and genotype, such as genome-wide association studies (GWAS). ..." [Related: W.U. wins right to keep cancer research samples "Human tissue, blood and DNA samples in limbo since 2003 because of a legal battle can now be used for prostate cancer research, Washington University officials said Wednesday after winning a key ruling. ..."]
There is a price to pay for our DNA | Telegraph "The new genetics could draw all of us, healthy or not, into the medical net - at great cost for all, but uncertain benefit except for a few. ..." [Related: The Discoverer s DNA - New York Times "The question of what we want to know and don t want to know about what our genes can tell us will only grow with time. ..." The National Pastime (The New York Times) "...as more people use genetic engineering it becomes socially acceptable and everyone has to do it or their children will be left behind..."]
Parents support genetic testing, DNA biobanks "54% of adults endorse genetic testing even for diseases with no effective treatments ..."
Our Opinion: Collection of DNA samples is a violation of our privacy "...lawmakers snuck in a measure that would require all people arrested for some crimes, both misdemeanors and felonies, to provide a DNA sample for state records. ..."
In the Amazon, Giving Blood but Getting Nothing - New York Times "As the Karitiana Indians remember it, the first researchers to draw their blood came here in the late 1970s, shortly after the Amazon tribe began sustained contact with the outside world. Now they have been enraged by a simple discovery: their blood and DNA collected during that first visit are being sold by an American concern to scientists around the world for $85 a sample. ..."
Ancestry.com Enters DNA Genealogy Field Through Exclusive Partnership With Sorenson Genomics "Ancestry.com will combine its unrivaled collection of online family trees and historical documents with Sorenson Genomics' precision ancestral DNA testing. This unique partnership promises to revolutionize family history by allowing people to trace their roots and connect to distant cousins through DNA at the click of a mouse. ..." [Related: DNAPrint(R) Genomics Releases EuroDNA(TM) 2.0. "... a new autosomal test to delineate people of European ancestry. The test is based on a recent paper in the American Journal of Human Genetics. ..." ... Salt Lake Tribune - DNA takes genealogy to new level "Ancestry.com will begin selling self-test kits online, allowing customers to swab the inside of their cheeks. The swab containing DNA will be forwarded to Sorenson Genomics, which will determine the customer's genetic profile. ..."]
Children born after PGD as healthy as those born after conventional IVF treatment "Children born after embryo biopsy for preimplantation genetic diagnosis (PGD) do not show any more major malformations than those born after artificial reproduction technologies (ART) without PGD, a scientist will tell the annual conference of the European Society of Human Genetics today ..."
Fever after smallpox vaccination tied to individual genetic variations "St. Louis researchers have identified common DNA variations that underlie susceptibility to fever after smallpox vaccination. Their finding is the first to link individual differences written into the genetic code with a vaccine-related complication albeit a mild one. ..."
Genetic News (BioValley Portal) "A leading U.S. scientist has applied to patent the world's first man-made life form. ..."
Nature Precedings "Nature Precedings is a place for researchers to share pre-publication research, unpublished manuscripts, presentations, posters, white papers, technical papers, supplementary findings, and other scientific documents. ..."
In Search of Enlightenment: Rejuvenation Research Paper "The moral imperative to combat aging is an important, and challenging, applied topic that moral and political philosophers (as well as society in general) should take seriously. So I am very pleased about getting this piece into a science journal dedicated to these concerns. ..."
Intricate Toiling Found In Nooks of DNA Once Believed to Stand Idle - washingtonpost.com "One implication is that many, and perhaps most, genetic diseases come from errors in the DNA between genes rather than within the genes, which have been the focus of molecular medicine. ..."
On the Horizon, Personalized Depression Drugs - New York Times "I have just described the state-of-the-art pharmacologic treatment of major depression in 2007. Don t get me wrong; we have very effective and safe treatments for a broad array of psychiatric disorders. But in everyday clinical practice, we have little ability to predict which specific treatment will work best for you. ..."
Prescription and over-the-counter pills may increase unhealthy behavior "Study finds that the more effective a drug is perceived to be, the more likely the user is to engage in risky behavior. Consumers who contemplate taking a prescription or over-the-counter drug for their condition become more likely to engage in bad habits like junk food and a sedentary lifestyle. ..." [Related: Internet Marketers of Supposed Human Growth Hormone Sprays Pay $172,500 "Two operations that marketed sprays that were supposed to help users lose weight, reverse the aging process, and prevent or treat diseases have settled FTC charges that their claims were bogus. ..."]
American Scientist Online - Our Bodies, Our Selves "Those wishing to orient themselves in today's vast landscape of biomedical advances may want to consultThe Politics of Life Itself, a study of 21st-century biomedicine by sociologist Nikolas Rose. ..."
British body backs inter-species clones - Yahoo! News "Making human-animal embryos for scientific experiments should be allowed because of the benefits to science and medicine ..."
Study identifies 5 genetic themes key to keeping stem cells in a primitive, flexible state "identified 1,155 genes under the control of a gene called Oct4 considered to be the master regulator of the stem cell state. ..."
Telling Stories - Understanding Real Life Genetics "The new web-based resource Telling Stories, Understanding Real Life Genetics was launched yesterday. This resource has been developed to illustrate the impact and utility of genetics on real life health care and to help practitioners gain more understanding of genetics in professional practice. ..."
1 in 100 11-year-olds use drugs to enhance performance in sport "Use of the drugs was given as a reason for winning at least one sporting event by 44% of the children. ..."
Genetics in the Literature
"Systems biology is the rapidly growing and heavily funded successor science to genomics. We outline some of systems biology's most important socioethical issues by contrasting the concept of systems as dynamic processes against the common static interpretation of genomes. Overall, we argue that systems biology socioethics could stimulate new ways of thinking about socioethical studies of life sciences. ..."
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"This study examined the types of information that pediatric cochlear implant (PCI) centers and teams provide to parents of deaf children and the extent to which the informed consent process extends beyond medical issues to include social and cultural aspects.. ..."
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"The objective of this article is to review the attitudes of different stakeholders (minors, parents, healthcare professionals, and relatives of affected individuals) towards predictive genetic testing of minors for familial breast cancer.Our review has made clear that many respondents fail to understand potential risks related to predictive genetic testing in minors. Respondents might have overly positive expectations about possibilities for genetic testing. . ..."
Boyer, B. B., G. V. Mohatt, et al. (2007). "Sharing results from complex disease genetics studies: a community based participatory research approach." Int J Circumpolar Health 66(1): 19-30.
"The objective of this manuscript was to propose a culturally appropriate approach to disseminate complex disease genetics research findings in small Alaska Native communities. Although we are just beginning our discussions with regard to sharing genetics research progress and findings, we believe that it is essential move forward as co-researchers in the CBPR enterprise. ..."
"To identify opinions about implications of genetic and other medical information among the general population, we conducted a series of focus groups in Seattle, WA. Key findings included the theme that genetic information was much like other medical information and that all sensitive medical information should be well protected. Personal choice (i.e., the right to choose whether to know health risk information and to control who else knows) was reported to be of crucial importance. Participants had an understanding of the tensions involved in protecting privacy versus sharing medical information to help another person. . ..."
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" Current regulatory controversy focuses on potential harms associated with direct-to-consumer (DTC) marketing of nutrigenetic tests and especially the need to protect consumers from unreliable tests, false claims and unproven dietary supplements. 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. 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. ..."
"The present study examined consent for genetic testing among African American smokers enrolled in a smoking cessation clinical trial. This study demonstrated the feasibility of obtaining consent for genetic analysis for smoking-related investigation among African American smokers. Findings support the inclusion of African Americans within genetic investigation of tobacco use and treatment. ..."
"In this paper, we review theoretical issues of gender, and research outcomes, in relation to genetic testing for hereditary cancers. We argue that integrating a gender analysis into assessment of new technologies and health programs is necessary to improve appropriateness, accessibility and effectiveness. Attention to gender is also critical to developing a deeper understanding of the ethical issues (both benefits and harms) raised by new genetic technologies. ..."
Davis, J. J. (2007). "Consumers' preferences for the communication of risk information in drug advertising." Health Aff (Millwood) 26(3): 863-70.
"Research was conducted to identify consumers' preferences regarding the form, content, and placement of drug side-effect information in direct-to-consumer (DTC) advertising. Consumers prefer detailed, readily accessible risk information--preferences that are a major departure from current advertiser practices and from what current and proposed Food and Drug Administration (FDA) regulations require. ..."
"There is no single 'best design' for large-scale studies of gene-environment interactions. Some studies are best performed in cohort studies where unbiased information can be collected on individuals years before disease onset. Other studies may be most efficiently done with a case-control design using currently available automated data. Population-based biobanks with nested case-control or case-cohort studies offer distinct advantages to some of the resource-intensive large-scale cohort studies under consideration, and may be more acceptable to many of the countries around the world currently considering such projects. ..."
"However, many new problems have to be explored before the establishment or expansion of a newborn screening programme. The purpose of this paper is to present some of the major problems that screening programmes will face in the near future. ..."
"Individuals' reproductive choices are private matters, but sexual conduct and pregnancy impose significant public health burdens. Ethical principles of public health are distinguishable from principles applied in modern bioethics. Bioethical principles have been developed at the clinical or microethical level, affecting relations among individuals, whereas pubic health ethics applies at the population-based or macroethical level. Resolution of issues, for instance of consent to healthcare interventions and preservation of privacy, is different in public health practice from in clinical medicine. ..."
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"The FDA Guidance for Industry: Pharmacogenomics Data Submissions was issued in 2005. This guidance document covers a broad area associated with how and when to submit genomic data to the FDA...."
"A consortium of 50 UK-based research groups has published its findings from a joint genome-wide association (GWA) study for seven common diseases. Using data from large numbers of individuals with these conditions, this study both identifies new genetic associations and provides important insights for the design of GWA studies. ..."
"Neurogenetic disorders share many characteristics with other rare disorders and raise complex bioethical issues for clinical practice and research. ..."
Gabriel, S. (2007). "Population genetic tools: application to cancer." Semin Oncol 34(2 Suppl 1): S21-4.
"The availability of a reference human genome sequence, an increasingly dense catalog, knowledge of common genetic variation, and new developments in technology present an unprecedented opportunity to systematically explore the genetic basis of complex human diseases such as cancer. . ..."
"This paper presents the results of the first public consultation for the creation of a large-scale genetic database, the Quebec CARTaGENE project. CARTaGENE is seen to hold promise for the greater population. However, reported across qualitative and quantitative studies is the concern for confidentiality and respect for the individual, transparency, the donor's right to feedback and governance. Participation would be conditional on a response to those concerns and a greater dissemination of information. ..."
Hafstein, V. (2007). "Spectacular Reproduction." Journal of Medical Humanities 28(1): 3-17.
"Ron Harris captured the popular imagination in October 1999 with a website where he auctioned off the ova of fashion models to the highest bidder. This article treats the controversy surrounding Harris’ site within a dual frame of critical theory’s approach to reproduction and a folkloristic approach to discourse. I argue that the great attraction of ronsangels.com is that it put into relief the intervention of mechanical reproduction in human fertility together with the state of genetics at the turn of the 21st century. l. ..."
Hunt, L. and K. de Voogd (2007). "Are Good Intentions Good Enough?: Informed Consent Without Trained Interpreters." Journal of General Internal Medicine 22(5): 598-605.
" Objective: To examine the informed consent process when trained language interpreters are unavailable. In the absence of adequate Spanish interpretation, it was uncertain whether these LEP patients were provided the quality and content of information needed to assure that they are genuinely informed. . ..."..."
Jenkins, C. L., A. R. Elliott, et al. (2006). "Identifying ethical issues of the Department of the Army civilian and Army Nurse Corps certified registered nurse anesthetists." Mil Med 171(8): 762-9.
"The purposes of this study were to identify the ethical issues Department of the Army civilian and Army Nurse Corps certified registered nurse anesthetists (CRNAs) encountered in their anesthesia practice and how disturbed they were by these issues. ..."
"This essay seeks to understand how nanoethics can play a role in nanotechnology development. What can and should nanoethics aim to achieve? The focus of the essay is on the challenges of examining ethical issues with regard to a technology that is still emerging, still ‘in the making.’ ..."
Kass, N. and A. Medley (2007). "Genetic screening and disability insurance: what can we learn from the health insurance experience?" J Law Med Ethics 35(2 Suppl): 66-73.
"Genetic information may be used by health and disability insurance companies to deny or restrict coverage. How health insurance companies use genetic information, and how public policy has limited that use, can be illustrative for genetics and disability insurance policy. ..."
"This study examined perceptions of genetic testing in a population sample of Kentuckians, with a focus on Appalachian and rural differences. . ..."
"This article examines the ethical and social implications of the Human Genome Project for individuals with intellectual disabilities and their families. It details the critique of prenatal testing articulated by many disability rights activists as well as scholarly and professional responses to that critique. ..."
"This longitudinal study examined how nursing students' moral judgment changes after they become qualified nurses working in a hospital environment. The sample used was a group of 80 nursing students attending a university in Suwon, Korea, between 2001 and 2003. By using a Korean version of the Judgment About Nursing Decisions questionnaire, an instrument used in nursing care research, moral judgment scores based on Ketefian's six nursing dilemmas were determined. The results were as follows: (1) the qualified nurses had significantly higher idealistic moral judgment scores than the nursing students; (2) the qualified nurses showed significantly higher realistic moral judgment scores than the nursing students; and (3) when comparing idealistic and realistic moral judgment scores, both the qualified nurses and the nursing students had higher scores for idealistic moral judgment. Further study is recommended to examine changes in moral judgment. ..."
King, M. (2007). "The ethics of genetic testing: Is more always better?" NC Medical Journal 68(2): 112-114.
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"The capacity to diagnose fetal disease or abnormality continues to grow, especially in the genetic definition of the fetus. With this growth have come claims of medical malpractice that have mostly centered on a failure of informed consent. . ..."
"Here the ideology of bioethics’ fundamental axioms is critiqued as arbitrary and exclusive rather than necessary and inclusive. The result unpacks the ideological and political underpinnings of bioethical thinking and suggests new avenues for a broader debate over fundamentals, and a different approach to bioethical debate. ..."
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"In the name of privacy and protection of study subjects, the research community has, albeit with good intentions, broken the historical doctor-patient compact, distorting an ideal of information exchange that might inform subjects of health risks or benefits ..."
Lachman, H. M. (2006). Battle of the Genomes: The Struggle for Survival in a Microbial World. Enfield, New Hampshire, USA, Science Publishers.
"Battle of the Genomes: The Struggle for Survival in a Microbial World discusses in some detail how catastrophic epidemics of cholera, bubonic plague, and smallpox could explain the emergence of certain common human genetic mutations. Some of these mutations are deleterious; for example, CFTR ΔF508, which reduces the risk for typhoid, causes cystic fibrosis in persons who inherit 2 copies. Other mutations are beneficial, such as CCR5 Δ32, which may have protected carriers from smallpox and now reduces the risk for HIV infection. ..."
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"This paper suggests that the use of a narrative rather than numerical conception of identity makes it possible to coherently claim that future children can be harmed by the use of reproductive technologies and that, as a result, potential parents can have obligations regarding the use of those technologies based upon that possibility of harm. ..."
Mangon, R. (2007). "The Medical (Ir)Relevance of Race and Ethnicity in a Multiethnic Society." Community Genetics 10: 199.
"Review of Troy Duster's 2007 article in the Lancet on BiDil ..."
"Laboratory setting varied among and within countries, as did qualifications of the directors.Molecular genetic testing is provided under widely varying conditions and regulatory frameworks. The data provided here may be a useful guide for policy action at both governmental and professional levels. ..."
"Joseph Jastrow's career illustrates the complex ways in which scientific psychology and pragmatist philosophy operated within the constraints of a moral economy deeply marked by notions of race. ..."
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"We report here an evaluation of the impact on relatives of being informed of study results that detected pathogenic BRCA2 mutations in a male relative, now deceased, who had early onset (under the age of 55) prostate cancer. Qualitative analysis of interviews with thirteen relatives indicated that those who had a higher risk perception, resulting from an awareness of cancer family history or experiential knowledge of cancer in their family, tended to adjust more easily to the results. All participants believed that genetics research results of clinical significance should be fed back to relatives. ..."
Po, A. L. W. "Personalised medicine: who is an Asian?" The Lancet 369(9575): 1770-1771.
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Polansky, S. (2006). "Overcoming the obstacles: a collaborative approach to informed consent in prenatal genetic screening." Health Law J 14: 21-43.
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Robert, J. S. (2007). "Gene maps, brain scans, and psychiatric nosology." Camb Q Healthc Ethics 16(2): 209-18.
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"Perceptions about the research varied, but we detected no critical opposition to the research. Incorporating community input and responding to concerns raised was challenging. However, the experience suggests that approaching genetic variation research in a spirit of openness can help investigators better appreciate the views of the communities whose samples they seek to study and help communities become more engaged in the science. ..."
Schneider, I. (2006). "Oocyte donation for reproduction and research cloning--the perils of commodification and the need for European and international regulation." Law Hum Genome Rev(25): 205-41.
"The article considers the regulatory landscape of oocyte donation in Europe and analyses different types, particularly whether oocytes are provided within or outside of the IVF context, and whether anonymity of the donor is legally possible or not. . ..."
"Tracing the historical complexities and development of benefit-sharing debates and the concerns that substantiate this ethical principle highlights the ambiguities and incoherencies that often characterize these discussions. ..."
Skipper, M. (2007). "Resourcing the genome." Nat Rev Genet 8(7): 494-495.
"The results of the pilot phase of the the ENCODE project — The Encyclopedia of DNA elements — have just been published . ..."
"This article includes an overview of two sets of regulations regarding informed consent. The goal of this article is to provide the clinical researcher with an explanation of the legal requirements for informed consent in clinical research. . ..."
"The objective of the present article is to describe the organisation of an international network of registries, the Alpha One International Registry (AIR), and the processes of enrolling and entering data. The success related to the convergence of national registries into a common database creating a unique registry beyond geographic boundaries and encompassing {alpha}1-antitrypsin deficiency from various ethnic groups. ..."
Swede, H., C. L. Stone, et al. (2007). "National population-based biobanks for genetic research." Genet Med 9(3): 141-9.
"Clinical practice guidelines derived from genetic research using population-based biobanks could dramatically change the nature of personal and public health medicine. Centralized population-based biobanks have been established or proposed in at least nine countries to date, and many lessons have been learned from these landmark developments. ..."
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"We have characterized the Y chromosome carried by President Thomas Jefferson, the general rarity of which supported the idea that he, or a patrilineal relative, fathered the last son of his slave Sally Hemings. Our findings represent a cautionary tale in showing the difficulty of assigning individual ancestry based on a Y-chromosome haplotype, particularly for rare lineages where population data are scarce. ..."
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" In this paper, the authors provide power calculations to aid in the design of such studies and quantify their benefits for detecting both genetic variants related to risk and interactive effects of genetic and environmental factors. . ..."
"The aim of this study was to describe the reasoning of people aged 60 years and over about prioritization in health care with regard to age and willingness to pay. ..."
"Drawing on qualitative interviews and ethics discussion groups which took place prior to or during the HFEA consultation, this paper explores the views of staff working in or linked to one PGD Unit in the UK, as to how they saw these potential changes. The paper thus provides an opportunity to develop greater understanding of how staff working in a morally contentious, innovative area viewed the potential expansion of their work, prior to that expansion taking place. ..."
Wilmshurst, P. (2007). "Dishonesty in medical research." Med Leg J 75(Pt 1): 3-12.
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Wolf, S. M. and J. P. Kahn (2007). "Genetic testing and the future of disability insurance: ethics, law & policy." J Law Med Ethics 35(2 Suppl): 6-32.
"This article, from an NIH-funded project, presents the first indepth analysis of the challenging issues: Should disability insurers be permitted to consider genetics and exclude predicted disability? May disabilities with a recognized genetic basis be excluded from coverage as pre-existing conditions? How can we assure that private insurers writing individual and group policies, employers, and public insurers deal competently and appropriately with genetic testing? ..."
"This study describes RNs' moral distress and the frequency of morally distressing events. Data were collected using the Moral Distress Scale and an open-ended questionnaire. ..."
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