Predictive Health Ethics Research (PredictER) is a multidisciplinary research, policy, and public education program of the Indiana University Center for Bioethics funded by a grant from the Richard M. Fairbanks Foundation, Inc., Indianapolis.
Friday, July 13, 2007
Recent Blogs on Predictive Health Topics: Gene Expression; The Daily Transcript; Eye on DNA ...
A top-down approach to genetic networks. July 5, 2007. From p-ter at Gene Expression.
Comments on data mining health records to correlate hereditary disorders.
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Reviewing ENCODE
ENCODE. July 4, 2007. From Alex Palazzo at The Daily Transcript. A summary and critique, for the general reader, of: “Identification and analysis of functional elements in 1% of the human genome by the ENCODE pilot project”. Nature 447, 799-816 (14 June 2007) doi:10.1038/nature05874.
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Ownership and Genetic Information
One Big Happy Family Genome, July 7, 2007. From Hsien-Hsien Lei at Eye on DNA. Lei comments on the BMJ “Head-to-Head” feature: “Should families own genetic information?” BMJ 2007;335:22 (7 July), doi:10.1136/bmj.39252.386030.AD.
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Translation
Towards a World without Genetic Diseases July 7, 2007. From Bertalan Meskó at ScienceRoll.
Mentions recent genetic research advances on muscular dystrophies and potential technologies to speed translation.
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Genetic Databases
Indian genetic database offers R&D advances, July 7, 2007. From Albin Paul at Microarray Blog. Describes the work of The Indian Genome Variation Consortium, including: “data on the genetic codes of over a 1,000 genes from among 15,000 individuals belonging to Indian sub-populations”.
Thursday, July 12, 2007
Research: Communicating Genetic Information; Event: CDC--Translational Genetic Research
Gaff, CL, et al. Process and outcome in communication of genetic information within families: a systematic review. European Journal of Human Genetics. [advance online publication 4 July 2007]; doi: 10.1038/sj.ejhg.5201883. http://www.nature.com/ejhg/journal/vaop/ncurrent/abs/5201883a.html
. . . . To understand the process by which communication occurs as well as its outcomes, a systematic review of actual communication in families about genetic risk was conducted. Findings from 29 papers meeting the inclusion criteria were summarised and are presented narratively. . . .
Gilbar, R. Communicating genetic information in the family: the familial relationship as the forgotten factor. Journal of Medical Ethics 33 (7), 390-3 (Jul 2007). pmid/17601865; doi/10.1136/jme.2006.017467. http://jme.bmj.com/cgi/content/abstract/33/7/390
. . . . Based on a legal and bioethical analysis on the one hand, and an examination of empirical studies on the other, this paper advocates the adoption of a relational perception of autonomy, which, in the context of genetics, takes into account the effect that any decision-whether to disclose or not to disclose-will have on the familial relationship and the dynamics of the particular family. . . .
Seminar Announced: “Closing the Gap Between Human Genome Discoveries and Population Health”. CDC Genomics, July 26, 2007.
Public Health Genomics Seminar Series: Closing the Gap Between Human Genome Discoveries and Population Health. http://www.cdc.gov/genomics/events/special1.htm
Session 6: But how do we translate new genetic knowledge into practice? 1-3 pm, ENVISION-Koger Center, Williams Bld, Room 1802/05. Centers for Disase Control and Prevention.
"How do we actually translate guidelines into action?" – Speaker: Jon Kerner, NCI
"What is the role of professional organizations, consumers, oversight and regulation?" -- Speaker: Kathy Hudson, Genetics and Public Policy Center, Johns Hopkins University.
[PredictER Note: Slides and video-casts will be posted following the event.]
Wednesday, July 11, 2007
Genetics and Predictive Health in the News, July 2-9, 2007
Study identifies a common genetic risk factor for colorectal and prostate cancer. July 8, 2007. University of Southern California. Eurekalert: http://www.eurekalert.org/pub_releases/2007-07/uosc-sia070607.php
"[O]ne of seven genetic risk factors previously identified as increasing the probability of developing prostate cancer also increases the probability of developing colorectal cancer".
U-M, Israeli scientists report major advance in search for genes associated with colon cancer. July 8, 2007. University of Michigan Health System. Eurekalert: http://www.eurekalert.org/pub_releases/2007-07/uomh-uis070307.php
"In a paper to be published in the July issue of Cancer Biology and Therapy, the international research team reports finding a significant link between genetic variation in a single region of human chromosome 8 and the risk of colorectal cancer. . . . The researchers compared the genetic makeup and family history of more than 1,800 colorectal cancer patients with that of 1,900 healthy people with the same breakdown of age, gender and ethnicity - either Ashkenazi Jew, Sephardic Jew or Arab/non-Jew".
Genetic Testing
Publication Announcement: Comparison of State Laws for Direct-to-Consumer Testing. July 06, 2007. The Genetics and Public Policy Center. DNApolicy.org: http://www.dnapolicy.org/news.release.php?action=detail&pressrelease_id=81
"Despite increased attention to the potential of direct-to-consumer (DTC) genetic tests to mislead consumers or waste their money – including a Federal Trade Commission warning in July 2006 – 26 states and the District of Columbia permit DTC laboratory testing without restriction, according to a new survey by the Genetics and Public Policy Center. .... [O]nly 13 states prohibit DTC testing, while 11 permit it only for specified categories of tests, which tend to exclude genetic tests".
Translational Research
$2 million Komen Award will fund research to reduce risk of breast cancer. July 5, 2007. Georgetown University Medical Center. Eurekalert: http://www.eurekalert.org/pub_releases/2007-07/gumc-mk070507.php
"Now that screening for genes that predispose a woman to breast cancer is routinely available, women at an increased risk are looking for ways to keep themselves healthy. Insoo Bae, PhD, a junior faculty member of the Lombardi Comprehensive Cancer Center at Georgetown University Medical Center received a $2 million research award from Susan G. Komen for the Cure . . . .
Bae . . . has developed a new methodology for studying the interaction between environmental carcinogens and genetic risk for breast cancer".
Asthma
Gene linked to childhood asthma: Scientists have identified a gene that is strongly associated with an increased risk of childhood asthma. July 4, 2007. BBC News: http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/6261876.stm
"Studying more than 2,000 children, they pinpointed a gene called ORMDL3, which was found at higher levels in the blood cells of children with asthma. . . . Carrying a specific variant of this gene may increase the risk of developing asthma by up to 70%".
Reproductive Technologies
Pre-implantation genetic screening reduces both ongoing pregnancy and live birth rates in over 35s. European Society for Human Reproduction and Embryology, July 4, 2007. Eurekalert: http://www.eurekalert.org/pub_releases/2007-07/esfh-pgs070407.php
"Lyon, France: Preimplantation genetic screening (PGS), often considered to hold out the best chance for older women undergoing IVF to have a pregnancy and birth, does not increase on-going pregnancy or live birth rates ...."
Genomics
NIH Roadmap leads to genomics. Stewart, A. July 3, 2007. Newsletter, PHG Foundation:
http://www.phgfoundation.org/news/month/07/2007/#story_3497
"As part of its Roadmap strategy to tackle major opportunities and gaps in biomedical research, the US National Institutes of Health has published its latest list of priority research areas that cut across all 27 of its constituent institutes and centres. There is a clear focus on genomics . . . ."
Tuesday, July 3, 2007
Ethics and Regulation of Predictive Health Research: A New Translational Paradigm
PredictER at the Upcoming 9th Annual Meeting (October 18-21, 2007) of ASBH
Monday, July 2, 2007
Other Blogs of Interest: The Personal Genome; Eye On DNA; The Genetic Genealogist
"Camping Around Health Insurance Discrimination".
- People who offer solutions to the genetics and health insurance issue, tend to fall into three camps:
- 1. the patient advocates
2. the free-market purists
3. the ignotarians
From Hsien-Hsien Lei's Eye On DNA:
"Amerindian DNA Sells for 55 Dollars".
- Clearly, scientists and others asking indigenous populations to donate biological samples need to do a better of job of communicating the overarching goals and benefits such studies can achieve. Judith Greenberg, director of genetics and developmental biology at the National Institute of General Medical Sciences:
- This is sort of a balancing act. We don’t want to do something that makes a whole tribe or people unhappy or angry. On the other hand, the scientific community is using these samples, which were accepted and maintained under perfectly legitimate procedures, for the benefit of mankind.
Legitimate for us maybe, but not necessarily for the Karitiana people.
From Blaine Bettinger's The Genetic Genealogist:
The Genographic Project Public Participation Mitochondrial DNA Database:
- An overview of-- The Genographic Project Public Participation Mitochondrial DNA Database. Behar DM, Rosset S, Blue-Smith J, Balanovsky O, Tzur S, et al. PLoS Genetics Vol. 3, No. 6, e104. doi:10.1371/journal.pgen.0030104.
Bettinger notes: "This paper is all about the mtDNA sequences they have obtained through the project. In the first 18 months of the project, they have collected an amazing 78,590 mtDNA genotypes!!"
Wednesday, June 27, 2007
W.U. wins right to keep cancer research samples
A three-judge panel of the 8th U.S. Court of Appeals in St. Louis upheld U.S. District Judge Stephen Limbaugh's ruling last year that thousands of "genito-urinary" samples donated to Washington University's GU Biorepository could not be transferred. ...........
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Dr. Larry Shapiro, dean of the Washington University School of Medicine, said the decision was of "national import," and would allow other institutions to move forward with creating their own repositories. The American Cancer Society and a number of universities had filed legal briefs in support.
Thursday, June 21, 2007
Parents support genetic testing, DNA biobanks - even without available treatments.
From Child Health and Evaluation Research (CHEAR) Unit: U-M C.S. Mott Children's Hospital
UMHS Press Release:
Parents support genetic testing, DNA biobanks - even without available treatments.
C.S. Mott Children’s Hospital National Poll on Children’s Health finds 54% of parents endorse genetic testing even for diseases with no available treatments.
Website:
CHEAR - National Poll on Children's Health
C.S. Mott Children's Hospital National Poll on Children’s Health, Vol. 1, Issue 4; June 20, 2007
A publication from the University of Michigan Department of Pediatrics and Communicable Diseases and the University of Michigan Child Health Evaluation and Research (CHEAR) Unit.
DNA Biobanks and Genetic Testing - For Whom, and When?
Report Highlights
* 54% of adults endorsed genetic testing even if no effective treatment is available.
* 38% of parents were willing to have their children’s DNA stored in a government biobank.
* Adults were more likely to store DNA in a government biobank if they support genetic testing for diseases despite the lack of available effective treatment.
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Data Source
This report presents findings from a nationally representative household survey conducted exclusively by Knowledge Networks, Inc, for C.S. Mott Children’s Hospital. The survey was administered from March 14-26, 2007, to a randomly selected, stratified group of adults aged 18 and older (n=2,076) with and without children from the Knowledge Networks standing panel that closely resembles the U.S. population.
PredictER Note: SEE ALSO "Storing and Testing Children's DNA". Eye on DNA, June 20, 2007.