On Thursday, July 15, a cross-section of the genetics community -- including advocacy organizations, health professionals, researchers, industry representatives, families, students, and more -- came together as a collective voice to educate Congress about public engagement in clinical research, public access to federally funded research results, and genetic testing oversight. Thank you to all participants for making Genetics Day on the Hill 2010 our largest and most successful event to date!

From August 9 through September 10, Members of Congress will return to their home states for an annual summer recess. This is the perfect time to contact your legislator and advocate for important issues in your community. Keep the momentum going from Genetics Day on the Hill!

View a detailed synopsis of the event.

Access Genetics Day on the Hill 2010 talking points.

Today, the Institute of Medicine's Roundtable on Translating Genomic-Based Research for Health will host a meeting in Washington, DC entitled, "Establishing Precompetitive Collaborations to Stimulate Genomics Driven Drug Development." Precompetitive collaboration allows competing entities to share resources early in the research process in order to increase the likelihood of useful discoveries. The workshop will examine the current obstacles to precompetitive collaboration and how their elimination can facilitate the translation of research discoveries in the laboratory into clinically marketable therapeutics.

Read about the meeting.

Today, the Equal Employment Opportunity Commission (EEOC) will celebrate the twentieth anniversary of the Americans with Disabilities Act (ADA) at EEOC Headquarters in Washington, DC. Two panels of ten speakers will discuss the history and the future of the ADA under the theme of "Celebrating the ADA: Looking Back, Moving Forward." At the event, the EEOC will present awards to current and former EEOC commissioners and staff who played important roles in the passage and enforcement of the law. Genetic Alliance staff will be in attendance; we hope to see you there!

Learn more about the celebration.

On Monday, July 12, HHS Secretary Kathleen Sebelius swore in Dr. Harold Varmus as the new director of the National Cancer Institute (NCI) of the NIH. Later that day, Dr. Varmus held a town hall meeting with NCI staff at the NIH to discuss his objectives for the future of the NCI. Some of his priorities include reforming the clinical trials system and improving the cancer drug approval and regulation process.

Dr. Varmus is the former director of the NIH and a 1989 co-recipient of the Nobel Prize in Physiology or Medicine for his studies of the genetic basis of cancer. Dr. Varmus served as the director of NIH under President Bill Clinton from 1993 to 1999. He returns to Washington, DC after serving as president of the Memorial-Sloan Kettering Cancer Center in New York since January 2000. Dr. Varmus currently serves as co-chair of President Obama's Council of Advisors on Science and Technology.

Watch the town hall meeting where Dr. Varmus establishes his priorities.

A mix-up last month at 23andMe, a company that offers direct-to-consumer (DTC) genetic tests, has led to a debate about the need for government oversight of genetic tests. 23andMe announced on June 8 that some customer samples were switched and as a result, several customers received DNA information that did not belong to them. 23andMe told customers the mix-up happened due to human error and the incorrect placement of a 96-well plate used during processing. The House Committee on Energy and Commerce intends to investigate the incident further, and requested 23andMe provide a number of documents to assist in their investigation by June 28 of last month. Today, the House Committee on Energy and Commerce will hold a hearing entitled, "Direct-to-Consumer (DTC) Genetic Testing and the Consequences to the Public Health." The Subcommittee on Oversight and Investigations will host the hearing at 9:30 am in the Rayburn House Office Building.

Learn more about the House Energy and Commerce Committee hearing.

On Tuesday, July 6, 23andMe announced that they sent a letter to the FDA and National Institutes of Health (NIH) asking for a collaborative effort to help develop guidelines for personal genomic tests. In the letter, 23andMe recognized that the inconsistencies in test results between different companies offering DTC genetic tests might be confusing to providers and the public.

Read the letter from 23andMe to the FDA and NIH.

On Thursday, July 29, the House Committee on Government Oversight and Reform will hold a hearing to discuss public access to publicly funded research results. The Subcommittee on Information Policy will host the hearing in the Rayburn House Office Building at 2:00 pm. The committee is holding the hearing as a result of growing interest in the issue of public access. Earlier this year, the White House Office of Science and Technology Policy hosted a public access policy online forum for participants to provide input on the need for and process to increase access to taxpayer-funded research results. On April 15, 2010, Representative Mike Doyle (D-PA-14) introduced H.R. 5037, the Federal Research Public Access Act (FRPAA), which was referred to the Committee on Government Oversight and Reform. At next week's hearing, the committee plans to review the issues surrounding public access to research in science, technology, and medicine.

Learn more about the hearing.

On Tuesday, July 13, the Department of Health and Human Services released its final rule on "meaningful use." Criteria for the meaningful use of electronic health records (EHRs) was first established last year as part of the Health Information Technology for Economic and Clinical Health (HITECH) Act provisions of the American Recovery and Reinvestment Act of 2009. The Department of Health and Human Services (HHS) through the National Coordinator for Health Information Technology has been responsible for developing "meaningful use" objectives that healthcare providers and hospitals must adopt to qualify for incentive payments under the Act. On Tuesday, July 20, the Subcommittee on Health for the House Committee on Ways and Means hosted a hearing in order to better understand the final rule and how the rule may impact the promotion and adoption of health information technology.

Learn more about the congressional hearing.

Read the final rule for "meaningful use".

Read a breakdown of the final rule.