Genetic Disease Foundation » General News

New California Law Protects Against Genetic Discrimination

GDF — Fri, 09 Sep 2011 02:44:47 +0000

California Governor Jerry Brown signed CA Genetic Information Non-discrimination Act yesterday, extending federal protections granted under Genetic Information and Nondiscrimination Act (GINA) in 2008. The new civil rights law prohibits the use of genetic information to discriminate against a person in housing, employment, education, health insurance, life insurance, mortgage lending and elections. It takes effect January 1, 2012.

“This new law enhances the civil rights of every Californian,” Senator Padilla said in a press release Wednesday. “Ten years from now as more and more Californians obtain their genetic information they will look back and thank Governor Brown for protecting them from discrimination.”

Source: The Spittoon

New CDC Pediatric Genetics Website

GDF — Wed, 26 Jan 2011 00:19:37 +0000

The Centers for Disease Control (CDC) has released an informative new Pediatric Genetics Website that includes easy-to-read information on genetic disorders, family health history, genetic counseling, and newborn screening. The site provides important information for the general public and health care professionals.

Visit the site

Study Results Find Surprising Reactions to Consumer Genetic Test Results

GDF — Fri, 21 Jan 2011 05:18:55 +0000

A report published last week in The New England Journal of Medicine found that people do not necessarily want to be protected from information about their health and genetic makeup. Most people say they’ll pay for genetic tests even if the predictions are sometimes wrong, and most people don’t seem to be traumatized even when they receive bad news. According to Dr. Eric Topol, the senior author of the report, “We saw no evidence of anxiety or distress induced by the tests.”

The New York Times delves into this topic with a recent article by John Tierney. Tierney also cited another study, published in Health Economics, in which researchers found most participants were willing to take a test even if didn’t perfectly predict their risks for disease. About 70 percent of the respondents were willing to take even an imperfect test for genetic risks of Alzheimer’s, and more than three-quarters were willing to take such tests for arthritis, breast cancer and prostate cancer.

Read the full article

NIH Genetic Testing Registry Planned for 2011

GDF — Tue, 11 Jan 2011 13:54:05 +0000

The National Institutes of Health (NIH) has announced plan to develop the Genetic Testing Registry (GTR) to provide a centralized online resource for information about the availability and scientific basis of genetic tests.

The Registry will have several key functions:

Encourage providers of genetic tests to enhance transparency by publicly sharing information about the availability and utility of their tests;
Provide an information resource for the public, including researchers, health care providers and patients, to locate laboratories that offer particular tests; and
Facilitate genetic and genomic data-sharing for research and new scientific discoveries.

NIH expects that the GTR will be publicly available in 2011. For additional information, please visit the NIH website.

Legislation for Rare Diseases Introduced

GDF — Wed, 18 Aug 2010 04:43:59 +0000

Earlier this August, Senators Sam Brownback (R-KS), Sherrod Brown (D-OH), and Al Franken (D-MN) introduced the Creating Hope Act of 2010 (S 3697), which aims to promote the development of therapeutics for rare diseases. The bill is aimed at providing incentives to pharmaceutical companies for the development of treatments for rare diseases. It would create a “priority review voucher” for companies that develop new rare disease drugs and biologics. Companies could use these vouchers to receive expedited review by the FDA of other drugs under development.

Source: Genetic Alliance

Genetics Day on the Hill

GDF — Sat, 10 Jul 2010 17:48:04 +0000

This Thursday, July 15, the Genetics Alliance, a nonprofit health advocacy organization, is leading the fifth annual Genetics Day on the Hill, a day of advocacy where disease advocacy organizations, health professionals, researchers, industry representatives, families and students meet with elected officials to help educate them on important issues related to health and genetics.

Participants will visit the offices of their elected officials to discuss key issues including public engagement in clinical research, public access to federally funded research results and genetic testing oversight. Participants will share personal and corporate stories about what is important to them and their families, work, and communities in the context of these issues.

To learn more visit the Genetic Alliance website.

National Library of Medicine Launches New Mobile Service

GDF — Thu, 28 Jan 2010 13:00:40 +0000

The NIH’s National Library of Medicine, the nation’s largest medical library, recently announced the release of Mobile MedlinePlus (http://m.medlineplus.gov), a complement to its MedlinePlus Internet service (http://medlineplus.gov), which provides authoritative consumer health information to over 10 million visitors per month.

Mobile MedlinePlus is available in English and Spanish (http://m.medlineplus.gov/spanish) and includes a subset of content from the full Web site. It includes summaries for over 800 diseases, wellness topics, the latest health news, an illustrated medical encyclopedia, and information on prescription and over-the-counter medications. The mobile site includes information about many genetic diseases including Gaucher, Prader-Willi Syndrome and Tay-Sachs.

Learn more about the service on the National Institutes of Health website.

FDA Unveils Transparency Initiative

GDF — Thu, 28 Jan 2010 02:10:53 +0000

Earlier this month the Food and Drug Administration unveiled the first phase of its Transparency Initiative, a new program designed to help explain how the agency operates, makes decisions, and approves drugs. This marks the first phase of FDA Commissioner Margaret Hamburg’s plan enhance the transparency of the FDA’s operations and decision-making processes. “This initiative will make information about the FDA more user-friendly and accessible to the public,” said Dr. Hamburg. “It fosters a better understanding about what we do.”

The initiative includes the launch of FDA Basics, a new website created to help the public better understand what the agency does. In the future the Commissioner’s Transparency Initiative task force will make recommendations on how to make information about agency activities more transparent, useful, and understandable to the public and how to improve the FDA’s transparency to regulated industries.

Find out more on the FDA website.

An Unusual and Inspiring Canavan Disease Discovery

GDF — Wed, 30 Dec 2009 19:04:10 +0000

From the December issue of New Jersey Magazine comes the inspiring story of Dee and Jim White who, after working with 10 doctors over the course of three years, learned that their two young daughters had Canavan Disease, a fatal neurological brain disorder. While most children affected with Canavan Disease suffer devastating symptoms at an early age, the White girls, age 6 and 9, lead happy, active lives.

It turns out that the White girls’ case is unusual because of their unique genetic makeup. The girls’ mother, Dee, has a never before seen gene mutation that could help lead to the discovery of a cure. Dr. Paola Leone, director of the Cell & Gene Therapy Center at the University of Medicine and Dentistry at New Jersey’s School of Medicine is working with the sisters’ genetic material to determine which genetic or biochemical mechanisms are responsible for their good health, in hopes of recreating it in other Canavan patients.

Read the full story at New Jersey Magazine.

Federal Genetic Nondiscrimination Law Now in Effect

GDF — Tue, 08 Dec 2009 04:52:35 +0000

Federal regulations implementing the Genetic Information Nondiscrimination Act (GINA) are in effect as of today, December 7, 2009. According to the Genetics and Public Policy Center:

GINA prevents health insurers from denying coverage or adjusting premiums on the basis of genetic information, or requesting that an individual undergo a genetic test. Employers are prohibited from using genetic information to make hiring, firing, or promotion decisions. The law also sharply limits an employer’s right to request, require, or purchase an employee’s genetic information.

Even though the rules are now in effect, public comments are being accepted through Jan. 5, 2010 and the government agencies responsible for GINA can change the rules after that date to reflect the information received.

To learn more visit the Genetics and Public Policy Center or the Know Your Genes website.