The Genetics and Public Policy Center at Johns Hopkins University, the National Coalition for Health Professional Education in Genetics, and Genetic Alliance have teamed up to produce educational materials about the Genetic Information Nondiscrimination Act (GINA).

The public-oriented materials - including an interactive website, “GINA & You” information sheet, and slide set for advocacy organizations – are available, at http://www.GINAHelp.org

The materials for health-care providers include background documents, a discussion guide suggesting how and when to talk about GINA with patients, a teaching slide set, and case studies that describe how the law works in a variety of real-world, clinical settings. These materials are available on the website for the National Coalition for Health Professional Education in Genetics (NCHPEG), at http://www.nchpeg.org/index.php?option=com_content&view=article&id=97&Itemid=120

The Genetics and Public Policy Center (GPPC), part of the Johns Hopkins Berman Institute of Bioethics, will have all of the materials on its website, at http://www.dnapolicy.org. The GPPC’s site also includes FAQs and other fact sheets about GINA aimed at a general audience.

The Center for Telehealth and e-Health Law (CTeL) is sponsoring a webinar about credentialing for telehealth on Monday, February 23, from 12:00-1:30pm EST.
For more information, go to: http://www.telehealthlawcenter.org/?c=125&a=1970

The American Journal of Obstetrics and Gynecology has published a review of evidence-based recommendations for preconception genetic services. To view a pdf of the article, click ajog_preconception_genetic_care_2009.pdf.

The Washington State Department of Health program recently released a series of new translated materials produced through grant funding from the Western States Genetic Services Collaborative. These materials include:

I. Orientación Sobre El Cuidado Médico Administrado Finding Your Way in Managed Care: A Guide for Washington Families of Children with Special Health Care Needs, 2000, revised May 2008, Spanish Version http://www.doh.wa.gov/cfh/mch/CSHCN_publications.htm

II. What’s the Plan?
Available in Spanish, Chinese, Vietnamese, Russian, and Korean. This one page worksheet is designed to help you organize your questions and concerns to plan for doctor visits. It also includes space for writing down “next steps”. http://www.cshcn.org/resources/CarePlans-Download.cfm

III. Transition Timelines:
Transition Timelines for Children and Adolescents with Special Needs: Developmental Disabilities/Delays. Now available in Korean.

Transition Timeline for Children and Adolescents with Special Needs: Chronic Illnesses/Physical Disabilities. Now available in Korean. http://depts.washington.edu/healthtr/Timeline/timeline_instr.htm

IV. Health History Summary for Teens.
Available in Korean, Chinese, Spanish, Russian, and Vietnamese http://depts.washington.edu/healthtr/healthhistory/default.html

V. WA State Medical Home Brochure for Families – Does Your Child Have a Medical Home?
Available in Korean, Chinese, Spanish, Russian, and Vietnamese http://www.medicalhome.org/resources/other_lang.cfm

To view a list of all of Washington State’s translated resources by language visit the University of Washington, Medical Home Leadership Network Website http://www.medicalhome.org/resources/other_lang.cfm

 

The Institute of Medicine’s Roundtable on Translating Genomic-Based Research for Health is holding a workshop, “Innovations in Service Delivery in the Age of Genomics,” on July 28, 2008, in Washington, DC. The workshop agenda and registration information is available at http://www.iom.edu/CMS/3740/44443/55005.aspx.
For questions, contact Erin Hammers at ehammers@nas.edu.

On February 2-6, 2008, the Children’s Hospital of Denver will be hosting a week-long educational series for health care professionals new to the field of inborn errors of metabolism. Registration is $475, and the registration deadline is January 1, 2008. See the attached flier for more details.