NIH Plans To Create New Genetics Testing Registry of Molecular Diagnostics Tests Offered by Clinical Pathology LaboratoriesPathologists and clinical laboratory managers will soon have a comprehensive registry of genetic tests that they can consult as needed. The National Institutes of Health is creating a single public registry with detailed information about both genetic test providers and the 1,600+ genetic tests these providers offer.
Dark Daily, Sep 3, 2010, by K. BranzFor Many Jews, Stem-Cell Ruling Puts Progress at RiskA wide spectrum of Jewish groups is voicing outrage against a judge’s surprise halting of federal funding for embryonic stem-cell research and are asserting a crucial Jewish stake in reversing the ruling.
The Jewish Daily Forward, Sep 1, 2010, by Joy ResmovitsBreast Removal Reduces Cancer Risk In Some WomenA new study in the Journal of the American Medical Association shows the clearest evidence yet that women carrying the BRCA1 and BRCA2 genes should consider preventive surgery because they are at a very high risk for breast and ovarian cancers.
NPR, Aug 31, 2010, by Patti NeighmondInherited Mutations May Point to an Aggressive Form of Prostate CancerTwo decades of data point to evidence that BRCA is a factor in certain aggressive forms of prostate cancer in Ashkenazi Jews.
Memorial Sloan-Ketting Cancer Center, Aug 24, 2010Illinois launches new high-risk pool for uninsuredA new health insurance option for people with preexisting conditions and without medical coverage launches in Illinois on Friday, but only a small fraction of the uninsured will benefit.
Chicago Tribune, Aug 19, 2010, by Judith GrahamFor Henry’s Sake: Pioneering a Genetic FrontierMy son Henry was born with a rare, inherited Jewish genetic disease, Fanconi anemia, which neither my husband, Allen Goldberg, nor I had ever heard of before. Among the first things we learned about FA was that it had the impossible-to-accept label “fatal.”
The Jewish Daily Forward, Aug 11, 2010, by Laurie StronginObservations: Should consumers have the right to buy any genetic test?The regulatory framework for the FDA's many charges [against DTC] is a tangled one, influenced by consumer and industry lobbies, government funding trends and innovation-driven changes. "In such a fast-changing landscape, striking the right balance between protecting the public and promoting innovation is crucial."
Scientific American, Aug 11, 2010, by Katherine HarmonIntermarriage Spurs Tay-Sachs AdvisoryCiting rising Jewish intermarriage rates, the leading organization devoted to combating Tay-Sachs is urging doctors to encourage the use of more comprehensive testing methodology to identify carriers of the deadly genetic disease.
The Jewish Daily Forward, Aug 11, 2010, by Lauren F. FriedmanFederal ‘Sting’ Slams Gene TestsAn undercover investigation of some firms that sell genetic test kits to consumers found misleading test results and "egregious examples of deceptive marketing," according to a report published today by the Government Accountability Office.
The New York Times, Jul 22, 2010, by Natasha SingerBeta-Thalassemia: Gene Therapy BreakthroughGene therapy may represent a safe alternative to current cures that are limited to a minority of patients. This research is not only crucial for developing a cure for one disease, but it may advance the entire discipline of gene therapy research.
Medical News Today, Jul 15, 2010Know your pedigree: Family medical history holds key to your healthA decade after scientists completed the once unthinkable task of charting the genetic codes of humans, a simple low-tech tool may be more, not less, important for staying healthy.
Winnipeg Free Press, Jul 12, 2010, by Helen BranswellGenetic testing requires more than a saliva sample kitOver-the-counter genomics: What we need to know.
JUF News, Jul 1, 2010FDA Faults Companies on Unapproved Genetic TestsThe FDA sent letters this week to five companies involved in direct-to-consumer genetic testing, saying their tests are medical devices that must receive regulatory approval before they can be marketed.
The New York Times, Jun 11, 2010, by Andrew PollackKaren Litwack: Comfortable in her genesCenter director Karen Litwack profiled in CJN's list of 10 Jewish Chicagoans
Chicago Jewish News, Jun 4, 2010Congress Opens Investigation Into Genetic Testing CompaniesA Congressional committee opened an investigation of three direct-to-consumer genetic testing companies this week. The House’s Committee on Energy and Commerce sent requests to the CEOs of 23andme, Navigenics and Pathway Genomics for a wide array of information about the companies’ services.
Wired, May 21, 2010, by Alexis MadrigalUC Berkeley plan test student DNA raises alarmsA request for voluntary DNA samples from incoming UC Berkeley students has sparked quick criticism from privacy and genetic-science groups and even some corners of campus.
San Jose Mercury News, May 20, 2010Walgreens won't sell over-the-counter genetic test after FDA raises questionsWalgreens reverses course after the FDA challenges the legality of its over-the-counter genetic testing kits.
The Washington Post, May 13, 2010, by Rob SteinCompany plans to sell genetic testing kit at drugstoresWalgreen's will offer over-the-counter genetic testing kits this week, concerning those who worry it will open a Pandora's box of confusion, privacy violations, genetic discrimination and other issues.
The Washington Post, May 12, 2010American Society of Human Genetics on DTC Genetic TestingASHG statement warning against Walgreens plan (now retracted) to sell genetic testing kits in pharmacies; other cautions about DTC remain relevant.
ASHG Policy and Advocacy, May 12, 2010The Genetics Issue: New screening for Persians, the Gaucher-Parkinson's connection, childhood obesity in Israel and moreArticles targeting a wide variety of Jewish genetics issues, including Sephardic disorder screening, genetic links between Gaucher and Parkinson's diseases, and mammogram guidelines
The Jewish Week, May 5, 2010Gene patents rejected by federal judgePhysicians agree that patents can be useful in spurring medical inventions, such as new drugs. But overly broad patents, like those held by Myriad, created a monopoly "that hampered scientific discovery and medical care," said American Medical Association President J. James Rohack, MD.
American Medical News, Apr 12, 2010, by Amy Lynn SorrelGenetic tests can unravel the mysteries of your DNAGood general article explaining the benefits and uses of genetic testing and screening
Los Angeles Times, Apr 12, 2010, by Tammy WorthAre patients misserved by patents on human genes?Some tests can be obtained from just one source because of limitations. A look at both sides of the issue.
Los Angeles Times, Apr 12, 2010, by Brendan BorrellJudge Invalidates Human Gene PatentA federal judge on Monday struck down seven patents related to the genes BRCA1 and BRCA2, whose mutations have been associated with cancer. The decision, if upheld, could throw into doubt the patents covering thousands of human genes and reshape the law of intellectual property.
The New York Times, Mar 29, 2010, by John Schwartz and Andrew PollackThe Health Bill: How It Could Impact YouHealth bill may increase access to treatment, protect coverage in case of job loss, ensure coverage despite pre-existing conditions, and increase quality and quantity of life for young women
Living Beyond Breast Cancer, Mar 24, 2010, by Anna ShafferCenter Applauds NIH's Newly Announced Genetic Test Registry As An Important First StepThe Genetics and Public Policy Center at the Johns Hopkins Berman Institute of Bioethics applauds today’s announcement by the National Institutes of Health that it will establish a voluntary genetic test registry and encourage genetic test providers to share information about the availability and utility of their tests.
Genetics and Public Policy Center, Mar 18, 2010Do you carry a genetic disease?Georgia program aims to raise awareness of genetic diseases, especially among local Jewish community
Savannah Morning News, Mar 9, 2010Dr. Barton Childs, Who Studied Inherited Diseases, Is Dead at 93Dr. Barton Childs, a founder of pediatric genetics and an important contributor to the understanding of inherited diseases, died on Feb. 18. He was 93, lived in Baltimore, and taught at Johns Hopkins University for nearly 70 years until shortly before his death at its hospital.
The New York Times, Mar 8, 2010, by Lawrence K. AltmanMarch is National Colorectal Cancer Awareness MonthApproximately 3% of people who develop colorectal cancer have an inherited condition known as Lynch syndrome, or HNPCC. People with Lynch syndrome have a greatly increased chance of developing colorectal cancer, especially at a young age (under 50).
Centers for Disease Control and Prevention, Mar 5, 2010Lawsuit attacks patent giving company control over genetic test for cancer riskAfter receiving a diagnosis of aggressive breast cancer at age 43, Lisbeth Ceriani wanted to find out whether she had the BRCA gene mutation. Ceriani said she could not afford the test. She is one of the plaintiffs in a lawsuit claiming that Myriad's exclusive right to conduct tests for the mutation is unconstitutional.
The Washington Post, Mar 2, 2010, by Kari LydersenOverlooked health issues deserve our attentionLast summer, Sondra Feldman interned at the Chicago Center for Jewish Genetic Disorders, a center that empowers community members to seek information about genetic disorders and hereditary cancers. Feldman decided that this issue needed to be recognized by the greater campus community. What started as a summer internship quickly spiraled into a campus-wide event.
Daily Illini, Feb 26, 2010, by Ashley AbramowiczAP: Genetic disease testing leads some adults not to have kidsSome of mankind's most devastating inherited diseases appear to be declining, and a few have nearly disappeared, because more people are using genetic testing to decide whether to have children. (Text and video)
USA Today, Feb 24, 2010, by Marilynn MarchionePBS Airing Series on Technology and Diagnosing Rare DiseasesThe PBS program Bonnie Erbe’s To The Contrary is airing a three-part documentary-style series of field pieces and discussion segments on genetic technologies and its impact in diagnosing rare disease.
SNiPs, Children's Rare Disease Network, Feb 17, 2010Date against timeWith both a double mastectomy and removal of her ovaries looming in the near future, Jaclyn Jensen wants to find Mr. Right and have kids before it’s too late. No pressure.
Time Out Chicago, Feb 11, 2010, by Kari LydersenHillel Blog: In My GenesSondra Feldman, the Center's 2009 Lewis Summer Intern, talks about her experience working at the Center as well as I Dream of Gene Week at University of Illinois at Champaign-Urbana, March 1-6.
JUF/Hillel Blog, Feb 9, 2010, by Sondra Feldman'Law of Nature' or 'Invention'? Court Mulls Patentability of GenesGood, clear rundown and status report on ACLU v. Myriad Genetics, the BRCA gene patenting case now in federal court.
New York Law Journal, Feb 3, 2010, by Mark FassTesting for Breast Cancer Gene: No Simple AnswersExperts from the University of Michigan Comprehensive Cancer Center warn that the BRCA test is not appropriate for all women.
Newswise, Jan 18, 2010, by University of Michigan Health SystemDirect to consumer genetic testing: Avoiding a culture warCommentary: How do we avoid the incipient culture war between purveyors of DTC and the medical genetics community?
Genetics in Medicine: August 2009 - Volume 11 - Issue 8 - pp 568-569, Jan 18, 2010, by James P. Evans, MD, PhD and Robert C. Green, MD, MPHThe Newborn Screening Summit: Envisioning a Future for Newborn ScreeningSummit agenda, webcast recording and materials now available from GA Newborn Screening Summit: Envisioning a Future for Newborn Screening
Genetic Alliance, Jan 7, 2010Which experts are right?New mammogram guidelines perplex everyone. An article by the Center's program associate.
JUF News, Jan 6, 2010, by Esther BergdahlFamilial Mediterranean Fever: Rare genetic disease is often misdiagnosedFMF, which primarily affects Greeks, Armenians, Turks, and Sephardic Jews, has ancient roots but remained a medical mystery until the mid-20th century.
Los Angeles Times, Dec 28, 2009, by Claire Panosian DunavanMolecular link bridging two inherited disorders foundNew research has found a molecular link between Fanconi Anemia (FA) and Bloom's Syndrome (BS).
DNA (Daily News & Analysis), Dec 28, 2009NCI Statement on Breast Cancer ScreeningNCI responds to the new recommended guidelines recently issued by the U.S. Preventive Services Task Force.
National Cancer Institute, Nov 25, 2009Mammogram Recommendations Draw Widespread AngerNew guidelines saying women between the ages of 40 and 50 should not receive mammograms to screen for breast cancer have met a groundswell of rejection from many medical centers, breast cancer survivors and numerous doctors -- some of whom have advised their patients to ignore the recommendation.
ABC News Health, Nov 18, 2009, by Joseph BrownsteinNIH Announces First National Research Study Recruitment RegistryIndividuals who want to participate in research studies now can connect online with researchers nationwide through ResearchMatch.org, the first disease-neutral, volunteer recruitment registry.
National Institutes of Health, Nov 18, 2009A personal choice and a personal missionBRCA-positive cancer researcher works to start mutation carrier tissue bank for research
Times Union (Albany, N.Y.), Nov 3, 2009Local high school raising funds for familial dysautonomiaFD Now, an organization founded in honor of Andrew Slaw, a Stevenson High School student who has familial dysautonomia, was chosen as the recipient of funds raised by Stevenson’s National Honor Society’s Spirit Walk.
Trib Local Buffalo Grove, Oct 27, 2009, by Bridget DoyleGene Behind Gaucher Disease a Player in Parkinson'sAn unprecedented worldwide study has clinched the case that the gene behind Gaucher disease is also involved in Parkinson's disease.
HealthDay, Oct 21, 2009, by Ed EdelsonStandards for Tay-Sachs Carrier ScreeningIntermarriage in the American Ashkenazi Jewish population has prompted NTSAD to recommend a more accurate form of detecting Tay-Sachs mutations in standard carrier screening tests.
National Tay-Sachs and Allied Diseases Association, Sep 29, 2009Tay-Sachs Research Receives Unprecedented NIH GrantThe National Institutes of Health has awarded a four-year, $3.5 million grant to the Tay-Sachs Gene Therapy Consortium, the largest grant ever given for Tay-Sachs specifically for therapy.
The Jewish Daily Forward, Aug 27, 2009, by Joy ResmovitsLearn more about the EARLY ActCongresswoman Debbie Wasserman Schultz has introduced legislation to fund nationwide education and awareness programs about breast cancer in young women.
Rep. Debbie Wasserman-Schultz, Aug 24, 2009Genetics expert, innovator dies in ChicagoDr. Yuri Verlinsky, a pioneer in the field of reproductive technology and genetic testing methods, died July 16 in Chicago. Dr. Verlinsky founded the Reproductive Genetics Institute and invented many now-standard prenatal and embryonic tests that help families screen for genetic disorders.
Los Angeles Times, Jul 22, 2009, by Thomas H. Maugh IIA Brave New WorldA Brave New World is a podcast featuring filmmaker Joanna Rudnick and Pulitzer prize winner New York Times journalist Amy Harmon talking to Michele Kort, the senior editor of Ms. Magazine about breast cancer, genetic mutations and how advances in science are leading to difficult questions about genetic diagnosis.
P.O.V, Oct 31, 2008Hillel and Women’s Health Hillel News, Oct 23, 2008Christina Applegate: Why She Had a Double Mastectomy The Oprah Winfrey Show, CNN.com, Oct 14, 2008, by AuthorGetting Tested: Why College Jews Need to KnowNow highlights the Chicago Center for Jewish Genetic Disorders and features the Center‘s genetic counselor and two Genetic Education and Screening Program participants.
Hillel News, Feb 21, 2008
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