PredictER News Brief
Predictive Health Ethics Research
October 15, 2007


Indiana University
Center for Bioethics
410 W 10th Street, Suite 3100
Indianapolis, IN 46202
Tel: 317-278-4034



In the News ...

Cancer and Genetics

Genes that both extend life and protect against cancer identified. University of California - San Francisco. EurekAlert!, 14 October 2007.
[N]ew research ... identifies naturally occurring processes that allow many genes to both slow aging and protect against cancer in the much-studied C. elegans roundworm. ... Many of the worm genes have counterparts in humans, suggesting that new drugs may some day ensure a long, cancer-free life.

Genome update defines landscape of breast and colon cancers. Johns Hopkins Medical Institutions. EurekAlert!, 11 October 2007.
In a systematic search of 18,191 genes representing more than 90 percent of the protein-coding genes in the human genome ...  the Johns Hopkins scientists found that most cancer-causing gene mutations are quite diverse and can vary from person to person.

'Network' approach identifies potential breast cancer susceptibility gene.  Dana-Farber Cancer Institute. EurekAlert!, 9 October 2007.
[A]n international group of collaborators have used data on genes involved in inherited forms of breast cancer to identify a novel gene potentially linked to the disease. ... Their approach ... used advanced laboratory techniques plus novel "data mining" approaches to discover new cancer-related genes.

* * *
Other Research News ...

-- China, Arthritis, Cholesterol,  ...  --

First Asian genome sequenced. Brendan Borrell. Nature News, 12 October 2007.
Individual genomes get boost from Chinese effort.
Scientists in Beijing announced yesterday that they have sequenced the diploid genome of a Han Chinese individual. The announcement comes on the heels of the completion of Craig Venter’s and James Watson’s personal genomes earlier this year.

Hunt for osteoarthritis gene link. BBC News, 11 October 2007.
British researchers are to carry out the first study to seek to uncover the genetic causes of osteoarthritis. - The analysis of DNA from 14,000 volunteers could lead to a simple test for predicting who is at risk from severe forms of the disease.

MIT links gene to cholesterol. Massachusetts Institute of Technology. EurekAlert!, 11 October 2007.
Research could lead to drugs for atherosclerosis, Alzheimer's - MIT researchers have discovered a link between a gene believed to promote long lifespan and a pathway that flushes cholesterol from the body. ... The finding could help researchers create drugs that lower the risk of diseases associated with high cholesterol, including atherosclerosis (clogged arteries) and Alzheimer's disease.

Severe heart defect likely caused by genetic factors. Cincinnati Children's Hospital Medical Center. EurekAlert!, 10 October 2007.
The study ... is the first to show the high heritability and likely genetic underpinnings of HLHS [Hypoplastic Left Heart Syndrome] and recommend a direction for future research into its cause, development and possible therapeutic strategies.

Cognitive Problems a Family Affair for Parkinson's Patients. Osterweil, Neil. MedPage Today, 9 October 2007.
The authors conducted an historical cohort study of 1,019 first-degree relatives of 162 patients with Parkinson's disease and of 858 relatives of 147 matched controls chosen as a representative sample of the population of Olmsted County, Minn. They also evaluated 2,716 first-degree relatives of 411 patients with Parkinson's disease who were referred to the Mayo Clinic. ... They called relatives of patients with Parkinson's disease and administered the Telephone Interview for Cognitive Status-Modified, a 12-item instrument. For relatives with dementia, proxies answered questions about the relative's memory and activities of daily living, and whether he or she had been diagnosed with Alzheimer's, dementia, or senility. The authors also extracted data on dementia from a medical- records linkage system.

Researchers Identify Genes That Increase Rheumatoid Arthritis Risk. NIH News, 4 October 2007.
Researchers in the United States and Sweden have identified a genetic region associated with increased risk of rheumatoid arthritis ....

First significant genetic finding in severe PMS, or PMDD. Elsevier. EurekAlert!, 2 October 2007.
Previously, researchers have shown that women with PMDD [premenstrual dysphoric disorder] have an abnormal response to normal hormone levels and, thus, are differentially sensitive to their own hormone changes. Huo and colleagues now report their new findings, which link PMDD with common variants in the estrogen receptor alpha gene ....

Research shows how genetic mutation causes epilepsy in infants. Research Australia. EurekAlert!, 2 October 2007.
New research from the Howard Florey Institute in Melbourne has shown why mutation in a single gene can cause epilepsy in infants. ...

Genetics' Super Summer. Robert Langreth and Matthew Herper. Forbes, 2 October 2007.
The hunt for new genes has suddenly gone into overdrive - Between the end of May and the beginning of September, scientists discovered telltale genetic markers that help predict the risk of nine major diseases .... Some of these newly discovered markers will be used soon in diagnostic tests; others will help researchers better understand the diseases in order to invent new treatments. ...

* * *

Personalized Medicine

Blood test takes step toward predicting Alzheimer's risk, Stanford researchers find. Stanford University Medical Center. EurkeAlert!, 14 October 2007.
Researchers ... have developed a blood test that is a step toward giving people an answer two to six years in advance of the onset of the disease.

Genome Guru Wants to Map 10,000 Human Genomes in 10 Years. Randy Dotinga. WIRED, 11 October 2007.
The news about Venter's genome convinced about 200 people to volunteer to take part in the Venter Institute's genome-testing project. .... Some scientists predict personal genome testing may become generally available within five years, but Venter's group still expects tests to cost $300,000 each .....

Editorial: Beware gene screening advice. [349 words] NewScientist, 6 October 2007.
Wouldn't it be great if screening for genes could tell us the diseases we are likely to fall prey to? .... A growing band of companies now think we have the knowledge to do this .... Unfortunately, they have yet to make a convincing case for their claims.

The personal side of genomics. Nathan Blow, Nature 449, 627-630. 4 October 2007.
The technology necessary for a personal-genomics revolution is here on the scene. Most people say that the major concern for personal-genomics projects is how to deal with the data from participants. And even on that front there seems to be a lot of optimism within the genomics community.

Being Well Informed. Nathan Blow, Nature 449, 627. 4 October 2007.
George Church ... aims to integrate data for genomics, environment and phenotype in more than 100,000 volunteers. ... Perhaps the biggest issue for the project is how to acquire informed consent from so many participants, who will have their data become publicly available.

DNA Decoding Maps Mainstream Future.  Keith J. Winstein. WSJ.com, 4 October 2007.
Dropping Costs May Make Gene Sequencing of Patients More Common -- The price of reading a person's genome is plummeting, raising hope for new medical discoveries and cures. It cost the Human Genome Project $3 billion to extract the first complete genetic blueprint, which was completed in 2003. Now four companies are racing to bring the cost to below $10,000 ....

* * *

Pharmacogentics and Toxicogenomics

-- Copaxone, Toxicogenomic Tests, and Others --

Israeli scientists identify: Genes that affect responses of multiple sclerosis patients to Copaxone. Weizmann Institute of Science. EurekAlert!, 10 October 2007.
A group of Israeli scientists ...  have recently identified genes responsible for the positive response of many multiple sclerosis patients to the drug Copaxone.  These findings may contribute to the development of personalized medicine for multiple sclerosis sufferers.

Trial seeks 'genetic fingerprint' for predicting drug effectiveness. University of Cincinnati. EurekAlert!, 3 October 2007.
University of Cincinnati (UC) physician-scientists believe identifying a genetic “fingerprint” could help predict which specific therapies will be most effective for patients with gastric cancer. ... Researchers will compare pre- and post-surgery tissue samples to obtain the genetic data necessary to establish associations ....

NAS Report Offers New Tools to Assess Health Risks from Chemicals. NIH News. EurekAlert!, 9 October 2007.
The report from the NAS National Research Council (NRC) ... states that the technological hurdles that could have limited the reproducibility of data from toxicogenomic technologies have been resolved and recommends ways for the field to move forward. ...

* * *

Biobanks and DNA Databases ...

NIH launches SNP health association resource (SHARe) project. Maria Adams. PHG Foundation News, 11 October 2007.
The National Institutes of Health (NIH) is making a vast collection of genetic and clinical data freely available to researchers. Called the SNP Health Association Resource (SHARe), it will allow researchers to access extensive phenotype and genotype information from several of the large cohort studies ....

Prospective DNA Banking: Worthwhile? Ethical? Socially Acceptable? Ailsa Taylor. BioNews, 1 October 2007.
[D]espite ongoing debates over the power of genetics to estimate common disease risk, it is widely believed that genetic information will become increasingly important in healthcare. This has lead some experts to suggest that such information would be richer if people today chose to bank their DNA prospectively, in order that their relatives could access this data for genetic testing in the future.

* * *

Medical Records and Health IT

States and V.A. at Odds on Cancer Data. Gina Kolata. New York Times, 10 October 2007.
At issue, says Dr. Joel Kupersmith, chief of the department’s research and development office, is “the dynamic tension between patient privacy and the desire to use patients’ private information to do research.”

Your Health Data, Plugged In to the Web. Catherine Rampell. Washington Post, 5 October 2007.
HealthVault ... allows people to upload their medical records to the Web and share the information with doctors. ... Some privacy advocates are concerned that such sites could expose sensitive medical data to hackers and outsiders, but Microsoft said it has spent the past several years consulting with experts to ensure that HealthVault will keep personal information private.

Lilly's CEO Calls for Reform of Nation's Drug Safety System. PRNewswire / Lilly News, 2 October 2007.
Sidney Taurel, chairman and chief executive officer, Eli Lilly and Company ... called on the health care industry, medical community and U.S. government to actively collaborate on a health information technology system that would provide more rapid and useful insights on the effectiveness of medicines while improving drug safety.

* * *

Policy and Law ...

Italian court ruling favours pre-implantation genetic diagnosis.  Philippa Brice. PHG Foundation Newsletter, 9 October 2007.
In Italy, a Sardinian court has ruled that gynaecologist Giovanni Monni must provide pre-implantation genetic diagnosis (PGD) for a couple who are beta-thalassaemia carriers ....

Surveys show public distrusts HIPAA; researchers detest it. Nancy Ferris. GovernmentHealth IT, 2 October 2007.
Nearly three of five Americans agree that the privacy of their health information is not well protected by federal and state laws and organizational practices, according to a survey by Harris Interactive released today.

* * *

Blogs ...

PredictER Blog

Medical Records and the VA: Cancer, Laptops, Babies and Bath Water. PredictER Blog. 10 October 2007.
[T]he VA'S chief of research and development, noted that "the department was especially sensitive to privacy concerns in light of incidents like the theft by teenagers last year of a laptop computer containing personal information on 26.5 million veterans." The new directive does not, of course, provide information and privacy protections that would have prevented the theft of a laptop. Will the VA's new policy truly provide the information security and privacy protections that patients expect?

Biobanks and Dead People: DNA and the Taboo. PredictER Blog. 3 October 2007.
In an informative, two-part post at the end of August, Blaine Bettinger of The Genetic Genealogist introduced DNA banking for the deceased and questioned the ethics of biobanking without informed consent.

* * *
Other Blogs ...

Does Microsoft’s HealthVault really protect your privacy? David P. Hamilton. VentureBeat, 14 October 2007.
The big surprise (to me, at least) is that services like HealthVault aren’t covered by HIPAA, a mammoth federal law that, among other things, sets some strict standards for the privacy of medical data. Privately-managed record repositories like HealthVault apparently weren’t even envisioned when Congress passed HIPAA in 1996, and so they’re exempt from its provisions (which, to be fair, many people consider onerous).

Exciting Discoveries of 2007 | Breast Cancer. Cancer-Genetics, 13 October 2007.
It seems that year 2007 is one of the most exciting year in breast cancer genetics. There have been at least 7 new genes strongly linked to breast cancer this year ....

Insuring your genes. Richardson, Tyler. Little Blue Pill, 30 September 2007.
DNA-technology has enabled researchers to isolate ... dozens of genetic variations ... the cost implications to the health care system is serious. While diagnosing predisposition to ... disease early through DNA profiling will save lives and money, they are just predispositions - there is no guarantee of suffering from the disease as health is a complex web of genetics, environment, and individual habits. Therefore, many are fearful of releasing their genetic profile in fear that they will be left without that most precious security blanket - health insurance.

Yet Another Far Out Sequencing Idea? Keith Robinson.  Omics! Omics!, 11 October 2007.
[A]nother little-known company, [Base4 Innovation] this time English, has thrown its hat into the Archon X-Prize ring. ... One of the interesting things to observe as the genome sequencing field heats up is how many non-traditional entrants are being attracted.

* * *

Announcements ...

NHGRI Funds New Centers for Excellence in Ethical, Legal and Social Implications Research. NIH News, 10 October 2007.
Centers Established in North Carolina and Pennsylvania to Focus on Genomic Research - Over the next five years, grants totaling more than $12 million will be awarded as part of the Centers for Excellence in Ethical, Legal and Social Implications Research initiative, launched by NHGRI in 2004. The new centers are being established at the University of North Carolina-Chapel Hill and the University of Pennsylvania in Philadelphia.

Researchers expand efforts to explore functional landscape of the human genome.  NIH/National Human Genome Research Institute. EurekAlert!, 9 October 2007.
Full-scale ENCODE project will survey entire human instruction book - The National Human Genome Research Institute (NHGRI) ... announced grants totaling more than $80 million over the next four years to expand the ENCyclopedia Of DNA Elements (ENCODE) project ....  [Grant recipients include:] Xiaoman Li, Ph.D.; Indiana University, Indianapolis; $870,000 (three years); Discovery of Cis-Regulatory Modules in the Human Genome. This team will strive to develop computational methods for identifying conserved cis-regulatory modules in non-protein coding regions of the human genome.

Grant supports study of abnormal ring-shaped chromosomes.  Children's Hospital of Philadelphia. EurekAlert!, 9 October 2007.
Misshapen Structures linked to epilepsy, mental retardation - When chromosomes, which are normally bar-shaped, instead bend into a ring before birth, they may disrupt normal development and cause a multitude of problems. Genetics experts at The Children’s Hospital of Philadelphia will be investigating one such disorder, supported by a $126,000 grant from the Ring Chromosome 20 Foundation.

NIGMS Grantees Win Nobel for Gene Targeting.
The Nobel Assembly at Karolinska Institutet. NobelPrize.org, 8 October 2007.
Gene targeting is often used to inactivate single genes. Such gene "knockout" experiments have elucidated the roles of numerous genes in embryonic development, adult physiology, aging and disease. To date, more than ten thousand mouse genes (approximately half of the genes in the mammalian genome) have been knocked out. Ongoing international efforts will make "knockout mice" for all genes available within the near future.

NIH Announces Addition of 22 New Study Centers in National Children's Study.  NIH News, 4 October 2007.
The National Children's Study announced today that it awarded contracts in late September to 22 new study centers to manage participant recruitment and data collection in 26 additional communities across the United States.

* * *
Journal Club ...

Bexelius C, et al. Will forensic use of medical biobanks decrease public trust in healthcare services? Some empirical observations. Scand J Public Health 2007; 35 (4):442-4.
PMID: 17786809

Brand AM and Probst-Hensch NM. Biobanking for epidemiological research and public health. Pathobiology 2007; 74 (4):227-38.
PMID: 17709965

Burke W and Psaty BM. Personalized medicine in the era of genomics. JAMA 2007; 298 (14):1682-4.
PMID: 17925520

Bush H. Practical genomics. Out of the lab, into practice. Hosp Health Netw 2007; 81 (8):36-41, 2.
PMID: 17874817

Ellsworth RE, et al. The Clinical Breast Care Project: an important resource in investigating environmental and genetic contributions to breast cancer in African American women. Cell Tissue Bank 2007. [Epub ahead of print]
PMID: 17929197

Fenton E. Genetic enhancement: a threat to human rights? Bioethics (OnlineEarly Articles).
doi:10.1111/j.1467-8519.2007.00564.x

Gottweis H and Zatloukal K. Biobank governance: trends and perspectives. Pathobiology 2007; 74 (4):206-11.
PMID: 17709961

Hall MA, et al. Genetic screening for iron overload: No evidence of discrimination at 1 year. J Fam Pract 2007; 56 (10):829-34.
PMID: 17908514

Mackenzie C. Feminist bioethics and genetic termination. Bioethics 2007; 21 (9):515-6.
PMID: 17927628

Mullen C. Representation or Reason: Consulting the Public on the Ethics of Health Policy. Health Care Anal 2007.
PMID: 17922193

Riegman PH, et al. Biobanking for interdisciplinary clinical research. Pathobiology 2007; 74 (4):239-44.
PMID: 17709966

Thachuk A. The space in between: narratives of silence and genetic terminations. Bioethics 2007; 21 (9):511-4.
PMID: 17927627

Tupasela A. Re-examining medical modernization: framing the public in Finnish biomedical research policy. Public Underst Sci 2007; 16 (1):63-78.
PMID: 17575709

Wray NR, et al. Prediction of individual genetic risk to disease from genome-wide association studies. Genome Res 2007; 17 (10):1520-8.
PMID: 17785532




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.





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