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Showing posts with label Policy. Show all posts
Showing posts with label Policy. Show all posts

Genetic Alliance Celebrates its 25th Year

Genetic Alliance is a nonprofit health advocacy organization that improves health through the authentic engagement of communities and individuals. This year, they are celebrating their 25th anniversary, and they're hosting a variety of events throughout the year, including monthly salons around the country and the 25th Anniversary Annual Conference in June. If you cannot attend an event in person, you can still learn all about genetics, health, and advocacy with their webinar series. I've watched a few of these webinars in the past, including one on the Myriad gene patent case featuring John Conley from Genomics Law Report. In addition, they are honoring innovators in the genetics community and post new videos weekly. 

Read more to find out how to get involved: http://www.geneticalliance.org/25anniversary.

Accuracy of Individualized Risk Estimates for Personalized Medicine

Lucila Ohno-Machado, Professor of Medicine and Chief of the Division of Biomedical Informatics at UC-San Diego, will be giving a talk on "Accuracy of Individualized Risk Estimates for Personalized Medicine" next week, August 18, noon-1pm in 202 Light Hall. This should be an interesting perspective from a scientist with medical training on the utility of personal genomics tools in making healthcare decisions.

Bio: Lucila Ohno-Machado, MD, PhD, is Professor of Medicine and founding chief of the Division of Biomedical Informatics at the University of California San Diego. She received her medical degree from the University of Sao Paulo and her doctoral degree in Medical Information Sciences from Stanford University. Prior to her current role, she was director of the training program for the Harvard-MIT-Tufts-Boston University consortium in Boston, and director of the Decision Systems Group at Brigham and Women's Hospital, Harvard Medical School. Her research focuses on the development of new evaluation methods for predictive models of disease, with special emphasis on the analysis of model calibration and implications in healthcare. She is an elected member of the American College of Medical Informatics, the American Institute for Medical and Biological Engineering, and the American Society for Clinical Investigation. She is associate editor for the Journal of the American Medical Informatics Association, and will become Editor-in-Chief in January 2011. Dr. Ohno-Machado will discuss the problems with evaluating individual risk estimates and predictive models based on binary outcomes using existing methods. She will present alternative methods for evaluating calibration of risk assessment tools and discuss implications in healthcare practice.

Abstract: Medical decision support tools are increasingly available on the Internet and are being used by lay persons as well as health care professionals. The goal of some of these tools is to provide an "individualized" prediction of future health care related events (e.g.,  prognosis of breast cancer given specific information about the individual). Under the umbrella of "personalized" medicine, these individualized prognostic assessments are sought as a means to replace general prognostic information with specific probability estimates that pertain to a small stratum to which the patient belongs, and ultimately specifically to each patient. Subsequently, these estimates are used to inform decision making and are therefore of critical importance for public health. In this presentation, I will discuss the problems with assessing the quality of individual estimates, present existing and proposed tools for evaluating prognostic models, and discuss implications for individual counseling.

This should be an interesting talk, and very relevant to current regulatory issues surrounding personal genomics.

Webcast this Morning: House Committee on Energy and Commerce hearing on DTC Genetic Testing

A live webcast of the House Committee on Energy and Commerce hearing on “Direct-to-Consumer Genetic Testing and the Consequences to the Public Health" is available at this link. I had trouble viewing the webcast in firefox - had to save the link and open it with VLC media player to get it working. You can also follow the #HouseDTC hastag on Twitter.

In case you missed the FDA public meeting on oversight of Laboratory Developed Tests (LDTs), Dan Vorhaus over at Genomics Law Report posted recaps of day 1 and day 2 of the meeting.

Update July 22 1:48pm CDT: this webcast is over. You can read a written testimony from all the witnesses along with statements from committee members here. You can also follow ongoing discussion on Twitter, and of course check Genomics Law Report in the next day or two for further analysis by Dan Vorhaus.

Update July 23: The testimony from Gregory Kutz at the Government Accountability Office (referred to as the "GAO Report," available online here) in addition to the discussion at yesterday's House hearing on DTC testing caused quite a stir. 23andMe quickly responded with a thorough point-by-point rebuttal of major points made in the GAO report. Dan Vorhaus at Genomics Law Report posted a very thorough and thoughtful summary on yesterday's events and discussion. Daniel MacArthur has also posted a summary and response on Genomes Unzipped, and the comment string on this post is definitely worth reading through.

23andMe GCPM recaps and FDA meeting on Laboratory Developed Tests

You can find two nice recaps of last week's personalized medicine policy forum on Genomics Law Report and 23andMe's blog, The Spittoon. Also of interest today and tomorrow - the FDA is holding a public meeting to discuss issues surrounding the potential oversight of laboratory developed tests (a catagory which DTC genetic testing may fall into). You can find the agenda and links to the live (free) webcast here, or you could follow the #FDALDT hashtag on Twitter. The Washington Post published this nice piece over the weekend summarizing the issues.

Genomics and the Consumer: The Present and Future of Personalized Medicine

For those of you not following GGD on Twitter you may not have seen this - California State Senator Alex Padilla and 23andMe are hosting a policy forum entitled "Genomics and the Consumer: The Present and Future of Personalized Medicine" today in San Francisco. The agenda looks very exciting, featuring talks by Anne Wojcicki, co-founder of 23andMe, Leroy Hood from the Institute for Systems biology, Dan Vorhaus (@genomicslawyer, editor of Genomics Law Report), Senator Padilla, and several others. Hopefully 23andMe will record and make this exciting discussion available online soon. In the meantime, you can follow the #gcpm hashtag for live updates from those in attendance.

Federal Courts Invalidate Myriad's Breast Cancer Gene Patents

A District Court handed down a summary judgment invalidating most of Myriad's claims to both the BRCA1 DNA sequence and the method of testing for early-onset familial breast and ovarian cancer. See Genetic Future and Genomics Law Report for analysis.

Student Invited Seminar: Developing Effective Science Advocates – Making the case for increased funding for biomedical research

The Pharmacology department's student invited seminar is coming up next week. Last time the students invited an excellent speaker from Washington to talk about AAAS fellowships.

This year's student invited speaker is James S. Bernstein, Director, Government and Public Affairs for the American Society for Pharmacology and Experimental Therapeutics.

"Developing Effective Science Advocates – Making the case for increased funding for biomedical research"

Monday, March 1, 2010
2:00 pm in 206 PRB

Genomics to Confirm Nationality?

Thanks to Kylee for pointing out this frightening trend from the U.K. Border Agency.

http://www.sciencemag.org/cgi/content/full/326/5949/30

Essentially, the United Kingdom is experimenting with using mitochondrial and Y-chromosome markers to determine if asylum-seekers that flee persecution are actually from the nation in question.

Advocates of this policy don't seem to understand that genetic variation is not nation-specific. Just as you cannot "look" at a person and determine their nationality, you cannot look at their DNA to make that determination either.