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2008 ASHG Board of Directors
Aravinda Chakravarti, PhD President 2008
Edward R. B.
McCabe, MD, PhD
President-Elect 2008
David L. Nelson,
PhD
Secretary
Daniel L. Van
Dyke, PhD
Treasurer
Stephen T.
Warren, PhD
Past
President 2007
Wylie Burke, MD,
PhD
Past
President 2008
Joann A.
Boughman, PhD
Executive
Vice President
Cynthia C.
Morton, PhD
Editor
Directors
Miriam G.
Blitzer, PhD
Michael Boehnke,
PhD
Cynthia J. R.
Curry, MD
Harry C. Dietz,
MD
Charis Eng, MD,
PhD
Terry J. Hassold,
PhD
Muin J. Khoury,
MD, PhD
Mary-Claire
King, PhD
Tony Wynshaw-Boris,
MD, PhD
Elaine Strass
Executive
Director
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2008 Information and Education Committee
Ricki Lewis, PhD
Yvette P. Conley, PhD
Marlene Shaw, PhD
Adam Hott, EdD
Carl A. Huether, PhD
Howard P. Levy, MD, PhD
Christa Lese Martin, PhD
Leta M. Tribble, PhD
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2008 Ad Hoc Postdoctoral Committee
Lawrence J. Merritt II, MD,
Chair
Clement Y. Chow
Manika Govil, PhD
Cheryl Thompson, PhD
Denise J. Bouvrette (Adhoc)
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Genetic Information Nondiscrimination Act (GINA) Finally Becomes a Reality - Joann Boughman, PhD, ASHG Executive Vice President
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The Genetic Information Nondiscrimination Act (GINA) now awaits the President’s signature before it officially becomes federal law. |
After more than a decade of discussions about the importance of establishing a federal standard barring discrimination in employment and health insurance on the basis of genetic information, both the U.S. Senate and the House have
passed a bill that addresses these key issues in American health policy. The Genetic Information Nondiscrimination Act (GINA) now awaits the President’s signature before it officially becomes federal law.
In summary, the purpose of this legislation is to protect the privacy of Americans’ personal genetic information, and to prevent potential genetic discrimination in decisions about employment and health insurance coverage on the basis of an individual’s
genetic testing or screening results. Specifically, the new GINA statute will:
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Prohibit medical insurance companies offering group or individual health care plans from making decisions about coverage eligibility or adjusting premiums on the basis of an individual’s private, personal genetic information;
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Prohibit insurance companies from requesting that applicants for group or individual health coverage plans be subjected to genetic testing or screening, and prohibit them from discriminating against health plan applicants based on their genetic
information;
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Prohibit employers from using genetic information to refuse employment, and prohibit them from collecting employees’ personal genetic information without their explicit consent.
Although about three-quarters of U.S. states have some form of genetic nondiscrimination legislation in place, the current regulatory landscape is a patchwork of insurance and employment protections that varies from state to state. The passage of GINA
will set a national standard for all health care insurers and employers. However, it is important to note that some states have more restrictive laws that will still remain in effect.
Three perspectives are noted due to their importance to the members of the ASHG community
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For researchers: The fear of discrimination has deterred a significant number of people from having medically indicated genetic testing and screening procedures performed, and it has also kept families and individuals from
volunteering to participate in genetic research studies and clinical trials. With the recent passage of the GINA legislation, these concerns have been alleviated (for the most part), which means that people may now feel more confident that their
personal genetic information will be kept private and secure, and therefore they may be more likely to participate in scientific research studies that require the collection and storage of individual genetic data.
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For clinicians and counselors: Counseling sessions will not need to use time to explain at length possible adverse insurance or employment consequences as a result of misuse of results of genetic testing results. At-risk
individuals may now take advantage of predictive genetic testing that will inform the development of plans for early screening, diagnosis and intervention for many diseases with a genetic component (such as cancers, heart disease, diabetes and
depression). GINA’s passage also means that clinicians will be able to order genetic tests for patients and their families in a manner that ensures the full realization of the advantages of personalized medicine models, while easing patients’
concerns about the privacy of their personal genetic information and preventing the risk of genetic discrimination.
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For all individuals: As American health care consumers and employees, individuals will not have to fear the adverse effects of having themselves or family members tested to determine their risk status for genetic diseases.
The long saga of our efforts in the struggle for GINA’s approval in the U.S. Congress has taught us many lessons in advocacy. First and foremost, we learned that if a piece of legislation is believed to be the right course of action, it is important
to never give up or diminish your organization’s education and advocacy efforts. We discovered that it is imperative to continue moving forward in supporting such efforts, despite the many and constant opposing forces. In this case, the scientific and
clinical human genetics research communities formed partnerships with a strong alliance of patient and consumer advocacy organizations, as well as workers’ rights groups. As a founding member of the
Coalition for Genetic Fairness, The American Society of Human Genetics has been active in educating U.S. Congress members and supporting the passage of GINA. A large number of the nearly 8,000 members of ASHG wrote
letters of support to the bill’s sponsors and joined in the ongoing efforts to inform Congress about the need for this important legislation. As a member society of the Federation of American Societies for
Experimental Biology, these ASHG members were joined by more than 70,000 scientists who are members of the other 20 societies in FASEB’s network to support the passage of GINA.
Another important lesson that we learned was how essential it is to understand the basic nature of bipartisan and bicameral support for legislation. For GINA, several key Congressional staff spent hundreds of hours over the past 13 years discussing, negotiating, drafting and
revising the many different components of this technically complex legislation. Both the outside advocacy groups and Congressional staff members had to be aware of – and be able to deal with – the onerous, yet essential details of the bill’s implications
for health insurance companies and employers. Without the Coalition’s supportive and knowledgeable group of professionals who had the dedication and capability to work with a diverse group of stakeholders, this legislation would not have survived through
two consecutive administrations and five Congressional sessions, with many different party leaders involved in the decision-making process.
Advocacy groups that are involved in the support of a legislative initiative usually have the opportunity to appreciate some of the complexity of “how a bill becomes a law.” In the case of GINA, the bill’s supporters received what seemed to be advanced graduate level training,
as this legislation had to survive three committees of jurisdiction in the House, as well as the Senate committee process before it was finally approved by both chambers. GINA involved the integration of regulations and laws in many areas including civil
rights, privacy, insurance, employment and establishment of appropriate processes of legal recourse. Thus, it took a great amount of time, energy and unrelenting devotion on the part of many individuals and organizations to complete the tasks that were
necessary to achieve our goal. The scientific and clinical genetics research communities, and health care consumers across the U.S. are very grateful for the effort of so many unsung heroes who worked together consistently over the past 13 years to achieve
the ultimate goal of securing GINA’s approval in both the House and Senate.
ASHG is pleased that both the House and Senate have so clearly demonstrated their commitment to establishing a national standard of protection for the American people to prevent genetic discrimination. Although many states have already had individual forms of the legislation
in place, with the recent federal passage of GINA, the message is now unambiguous: the misuse of genetic information resulting in discrimination in employment or health insurance decisions is against the law in the United States.
On behalf of the genetics community, I would like to thank the many colleagues and allies who worked so diligently over the years on behalf of all of us to see this bill become a law. Among those who deserve our thanks are the following ASHG members: Sharon Terry, Kathy
Hudson, Francis Collins, Jennifer Lieb, Derek Scholes, Tim Leshan, and Barbara Harrison along with many others! [Please note that this brief summary will be supplemented on the ASHG Web site and in other sources
with a more complete analysis and further explanations of GINA’s legislative stipulations, as well as the implications for genetic researchers, clinicians, and health care consumers.]
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ASHG 58th Annual Meeting
November 11-15, 2008
Philadelphia, PA |
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Program Committee Update: An Overview of Special Sessions, Events and Other Program Highlights Dear Colleagues:
The ASHG Program Committee and Board of Directors invite you to attend the 58th Annual Meeting of The American Society of Human Genetics in Philadelphia, Pennsylvania, to be held from Tuesday, November 11, through
Saturday, November 15, 2008, at the Pennsylvania Convention Center. We would also like to take this opportunity to encourage you to submit your most exciting research for presentation at this year’s annual meeting. Please note that the deadline for submission
of abstracts is June 19, 2008.
The Program Committee has developed an exceptional and exciting program that will provide the highest quality scientific and clinical information to address the needs of our diverse audience. The Committee has worked to balance basic, translational, and clinical
research with educational and social issues. The scientific sessions of invited speakers and contributed papers are relevant to clinicians diagnosing and characterizing birth defects and developmental disorders; to counselors informing and supporting patients and
families about these disorders; to basic scientists deciphering the pathogenesis of Mendelian disorders; to geneticists dissecting contributions to complex traits including the latest genome-wide association studies; to researchers translating the wealth of
genomic information into function; and to all of us translating the wealth of genomic information into function and clinical application.
The ASHG Program Committee received a total of 68 proposals for invited sessions at the ASHG 2008 Annual Meeting. After reviewing all of the submissions, 26 of the proposals were accepted and divided into one of three types of sessions based on the topic or focus.
Specifically, the Program Committee selected 14 scientific sessions, the Information & Education Committee chose a total of six Education sessions, and the Social Issues Committee selected a total of four sessions for the 2008 meeting.
In addition, updates on research will be highlighted for epigenetics, non-coding RNAs, triplet expansions, pharmacogenetics, and therapy for genetic disorders. A new addition to this year’s meeting will be two hands-on training sessions in the use of the UCSC
Genome Browser, an increasingly essential tool for interpreting genetic and genomic information. We encourage you to register early for these training opportunities.
The majority of the scientific program involves plenary, platform and poster presentations by authors of abstracts. The Program Committee will again select platform abstracts from diverse disciplines to be grouped together in thematic and cross-topic sessions.
ASHG members have found these sessions valuable, as they encourage interaction among the different subspecialties of our Society.
The scientific program will be highlighted by 14 superb invited scientific sessions. There will also be a special hour-long symposium to celebrate the 100th anniversary of the Hardy-Weinberg Law. We have made some changes to the format this year. The Presidential
Symposium: Four Genome Stories will be held on Thursday, November 13, from 8:00 p.m. until 10:00 p.m. instead of on Friday evening. The Distinguished Speakers’ Symposium: Systems Biology, Regulatory Networks and Disease, will be held on Friday, November 14, from
4:00 p.m. until 6:00 p.m. instead of on Saturday afternoon. The Saturday program will include several platform sessions, a special invited session on genome-wide association studies, and the annual awards ceremonies. To review the entire schedule of events for the
ASHG 2008 Annual Meeting, please click here.
Trainee Events: In addition to the Trainee-Mentor Lunch, ASHG will be hosting the Career Networking Reception & Job Fair on Wednesday, November 12, for trainees seeking employment opportunities and job openings, as well as those who are interested in networking
with employers in the field and learning more about the professional development process.
We continue to attract attendees from other professional societies who enhance scientific, educational, and social interactions within our Society. We encourage you to communicate your ideas and
comments to ASHG and to share the ASHG 2008 Call for Abstracts/Meeting Information Web site (http://www.ashg.org/2008meeting/) with your non-member colleagues. ASHG
values the contributions of its members and we look forward to receiving your abstracts and seeing you in Philadelphia!
Sincerely yours,
Michael Lovett, PhD
ASHG Program Committee Chair |
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 When the Science Meets the City…We Hope You Will be There for the ASHG 2008 Annual Meeting in Philadelphia, PA!
- Pauline Minhinnett,
ASHG Director of Meetings
Philadelphia is known as the home of the Liberty Bell, Independence Hall, Benjamin Franklin, Rocky Balboa, the Philadelphia Eagles, a Philly cheese steak, a hoagie and much more, but did you also know that Philadelphia has an outstanding reputation for science and
research? The city abounds with graduate programs, teaching hospitals and biotech firms. It’s also the home of the world’s first computer, the first medical school, first zoo and first university established in the United States.
 However, in addition to sharing breakthrough science at the ASHG meeting, we hope you plan to enjoy the city and celebrate Philadelphia’s unique heritage by visiting historic homes (such as the Betsy Ross House), botanical gardens (such as Bartram’s Garden, which
is America’s oldest botanical garden), and centuries worth of architectural masterpieces. You can also visit museums: The Franklin Institute of Science Museum, The Academy of Natural Sciences, The College of Physicians, The Pennsylvania Academy of Fine Arts, The
Philadelphia Museum of Art, The Barnes Foundation, The Mummers Museum and many more. Click on the “City Pass” logo above to view discount programs. We also hope you plan to attend our special social event on Saturday, Nov. 15, from 7:00 p.m. 10:00 p.m. at the
National Constitution Center. You can purchase a ticket for this event during the registration process.
 For additional information about Philadelphia including dining, shopping, local weather, and the “Show Us Your Badge” program which entitles ASHG attendees to discounts just by showing your badge, click on the “Philadelphia Welcomes ASHG Attendees” link above.
Fun Facts about Philadelphia click here to view
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Philadelphia was founded in 1682 by William Penn.
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The concept of lightning being electricity was discovered by Benjamin Franklin in 1752 when he was able to draw lightning from the clouds by means of a kite.
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Philadelphia was America’s first capital from 1791 until 1800.
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Philadelphia is the second largest city on the East Coast and fifth largest city in the U.S.
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In recent years, Philadelphia has been named the number one restaurant city, America’s friendliest city and America’s safest large city.
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A hoagie has been a Philadelphia tradition since 1904!
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A cheese steak is one of Philadelphia’s most famous foods! If you want to sound like a local, order “one wit” which means with onions or “one witout” which means no onions!
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The world’s first computer (ENIAC) was built at the University of Pennsylvania in 1946.
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The first flag of the United States was sewn in Philadelphia by Betsy Ross in 1777.
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In 1874 the first zoo in the United States opened in Philadelphia.
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The Philadelphia Museum of Art has 72 steps leading up to it (made famous in the Rocky films)!
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Over 50 features length movies have been made in Philadelphia since Sylvester Stallone brought the streets of South Philadelphia, the Italian Market and the Delaware River waterfront to the big screen in his 1975 film, "Rocky." Stallone would return three more
times to film scenes for several of the "Rocky" sequels.
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Academy Award winning films made in Philadelphia since 1991 include: "Age of Innocence" and "Philadelphia," the Oprah Winfrey film, "Beloved," and the dark story of the future following a biological disaster, "Twelve Monkeys."
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Celebrity Philadelphians include: Kevin Bacon, Bill Cosby, Patti LaBelle, Will Smith, Kelly Ripa, Princess Grace of Monaco, Richard Gere.
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The Pennsylvania Hospital, founded by Benjamin Franklin and Thomas Bond, opened its doors in 1751 - the first hospital in America. In addition, Philadelphia is home to the nation's first medical school, first medical library, first children's hospital, first
cancer hospital, first eye hospital, first nursing school, and first dental school!
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Philadelphia is home to the nation's first public library - the Free Library of Philadelphia - founded by Benjamin Franklin in 1731.
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City Hall has 300 pieces of sculpture on the building. William Penn is the largest statue in the world on top of a building – It weighs 20 tons and stands 22’ high.
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The first World's Fair held in the new world was held in Philadelphia in 1876 to mark the centennial of the United States.
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The PSFS Building in downtown Philadelphia became the nation's first modern skyscraper (notably fully air-conditioned) when it opened its doors in 1932; now it is Loews Hotel.
For questions about the ASHG 2008 Annual Meeting in Philadelphia, PA, please contact Pauline Minhinnett, Director of Meetings for ASHG, via e-mail at: paulinem@ashg.org
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Important Dates:
| May 27 |
Meeting
Registration Opens |
| June 4 |
Ancillary
Meeting Application Deadline |
| June 19 |
Abstract
Submission Deadline |
| June 19 |
Student
Award Nomination Deadline |
| September 19 |
Early
Meeting Registration Deadline |
| October 3 |
Housing
Reservation Deadline |
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Invited Education Session Aims to Teach Attendees How to Effectively Communicate with the Media about Genetics and Avoid Contributing to “Genohype” in the News - Kristen Long, ASHG Communications Manager This
year, ASHG is excited to feature a new type of invited education session in the program for the 2008 Annual Meeting in Philadelphia. Co-moderators Kristen Long, Communications Manager for ASHG, and Cheryl Scacheri, Director of the Genetic Counseling Program for
the Genomic Medicine Institute of the Cleveland Clinic, organized the session, titled “Genetics Education by the News and Entertainment Media: Paradox or Paradigm?” The session will be held in the Pennsylvania Convention Center during the
Concurrent Education/Social Issues Sessions II held on Wednesday, November 12.
ASHG encourages all Society members to attend this interesting and informative invited education session, designed especially for those individuals who participate in media interviews where they must communicate with reporters about their scientific research,
clinical services and programs, or policy issues related to the human genetics field. Scientists and health professionals who provide genetics education to students and other lay audiences would also benefit from attending this session.
WHY ATTEND THIS EDUCATION SESSION? click question
The mass media’s reach exceeds that of any one scientist or even the scientific community as a whole, making it advantageous for genetics professionals to learn about the benefits and biases of
different media outlet formats. In this session, attendees will hear from four speakers with different backgrounds and communication goals, including a patient advocate who is a documentary filmmaker, a medical geneticist who is a technical advisor to
entertainment productions, and an academician who researches the media’s influence on public perception of genetics. These three speakers will discuss how context, purpose, level of knowledge and prior attitudes all influence the communication process, which
ultimately impacts the reader or viewer’s perception and understanding of the topic at hand.
Our last speaker will give practical advice and tips for improving interpersonal communication and media relations skills. Specifically, this skills training “mini-workshop” will teach genetics professionals what to do when preparing for (and participating in) a
media interview. Attendees will learn how to craft media messages that are newsworthy and interesting to reporters, as well as compelling, relevant and easily understood by the target audience. This session will also provide practical tips that will teach
attendees how to avoid being misquoted by reporters, and how to properly “frame” their media messages so that they avoid contributing to the “genohype” that is increasingly prevalent in news coverage of genetic research advances and the future implications and
impact that they will have on general health care practice and the use of targeted therapies (i.e., “personalized medicine”).
WHAT ARE THE OBJECTIVES OF THIS SESSION? click question
Many genetics professionals have found themselves going into great detail about their research in a media interview, only to be frustrated that their main points are missing or inaccurate in the final piece. This
session aims to help genetics professionals understand how the fundamental goals, constraints and potential biases of various forms of media influence the public’s perception of genetics. Although genetics professionals may not have the wide reach of the media, it
is important that they understand the media’s role in informing the public about human genetics and learn how to successfully communicate with reporters to ensure that coverage of their science is accurate and easily understood by non-scientists.
WHAT WILL ATTENDEES LEARN IN THIS SESSION? click question
After attending this session, attendees will have learned: (a) how the media contributes to the public’s understanding (and misconceptions) of genetics; (b) strategies for conveying complex genetic information to
reporters and the general public; (c) the different types of target audiences that genetics professionals will typically address with specific messages that provide scientific and medical information to these groups via the widespread reach of the media; (d) how
different media outlets (i.e., national news, health/medical trade publications, documentary films, television programs) are designed to influence the viewer’s perception of genetics; (e) and how to use the various formats to one’s advantage.
WHO ARE
THE EXPERT PANELISTS SPEAKING AT THIS EDUCATION SESSION? click question
Joanna Rudnick, Director/Producer, Kartemquin Films, Inc.  “‘In the Family’: The Process of Making a Documentary Film from Concept to Public Education Campaign”
Wayne W. Grody, MD, PhD, Associate Professor of Molecular Pathology & Medical Genetics, UCLA School of Medicine
“Human Genetics in Hollywood: Adventures of a Technical Advisor for Film and Television Productions”
Celeste M. Condit, MA, Professor of Speech Communication, University of Georgia
“The Public's Perception of Genetic Terminology in the News Media”
Ricki Lewis, PhD,
Fellow, Alden March Bioethics Institute at Albany Medical Center; Genetic Counselor, CareNet Medical Group; Freelance Science Writer
“Making the Most of Interviews with Health and Science Journalists”
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Take the ASHG 58th Annual Meeting Mini-Survey |
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2008 National DNA Day Essay Contest Winners Announced
- Katie Van Horne, ASHG Educational Programs Associate
Thank you to all of those who volunteered to judge this year’s DNA Day Essay Contest. We had a record number of judges who helped us to read and score the 1037 submissions we received this year. Winners were announced on
http://www.genednet.org and in NHGRI’s DNA Day Chat Room on April 25, 2008! Thanks to Applied Biosystems and HudsonAlpha Institute of Biotechnology, the top three students in each question received a cash prize and the teachers of
all first place students will purchase $2,000 worth of classroom equipment.
Middle School Question #1: Why is it important for us to discover the patterns of genotypic and phenotypic similarity and difference in living things, and why should we understand the theories that describe the importance of genetic diversity for species and
ecosystems?
Winner: Preethi Padmanaban, Chaboya Middle School, San Jose, California
Middle School Question #2: Why is it important for us to learn about our family health history? What can our family health/medical history tell us? What doesn't it tell us?
Winner: Jason Derby, Cuba City Elementary School, Cuba City, Wisconsin
High School Question #1: Discuss the practical implications that genetics research is playing in our lives today. Discuss where it might lead us in the next 10 years.
Winner: Kristin Young, Athol High School, Athol, Massachusetts
High School Question #2: If you could be a human genetics researcher, what would you study and why?
Winner: Laura Irei, Arcadia High School, Phoenix, Arizona
Read all the winning essays here
 ASHG Celebrates National DNA Day
at FASEB and Across the Country - Katie Van Horne, ASHG Educational Programs Associate On April 24, 2008, the ASHG education staff along with the American College of Medical
Genetics (ACMG) staff hosted a DNA Day event for FASEB employees. About 45 employees from multiple scientific societies extracted DNA from strawberries and learned about family health history. The event coincided with "Take Our Daughters and Sons to Work Day" so we
involved the children in a separate hands-on education session. We hope we inspired some future geneticists!
We also had several Genetics Education and Outreach Network members visit classrooms in their local areas. On behalf of ASHG, thank you for celebrating DNA Day 2008 with us.
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ASHG Education Department Publishes Paper on Student Misconceptions
- Kristen Long, ASHG Communications Manager & Katie Van Horne, ASHG Educational Programs Associate
ASHG’s education staff recently released the results of a new study published in the journal Genetics (“Essay Contest Reveals Misconceptions of High School Students in Genetics Content”), which indicated that, although all state science education standards in the U.S.
include genetics content, there is still a widespread lack of understanding that includes several common misconceptions which appear to be prevalent among high school students.
The authors of this conducted a systematic analysis of essays submitted by high school students as entries for the National DNA Day Essay Contest in 2006 and 2007. Although a number of the submitted essays displayed a solid understanding of genetics concepts and the
possible implications of genetics research, a significant number of essays included inaccuracies and misconceptions in the submissions from ninth through twelfth grade students.
The research paper also discusses possible sources and ways to address the misconceptions that were identified. Please click here to view
the paper.
“Our data add to the growing literature that student misconceptions can serve as barriers to enduring understanding,” said Kenna Mills Shaw, Ph.D., lead author of the study. “By focusing our examination of student writing in genetics we were able to identify specific
concepts that appear to be particularly difficult for students to dissect in this important field. Our next challenge is to identify the pedagogical strategies that are most effective in teaching students basic genetic principles, as well as ways that students can apply
their understanding of genetics concepts to their daily lives.”
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SNP-IT is published online four times a year,
in February, May, August and November. Copyright by
The American Society of Human Genetics.
Please direct all SNP-IT inquiries to
Kristen Long, Communications Manager, at
klong@ashg.org
For Society information, please
contact the ASHG Administrative Office, 9650
Rockville Pike, Bethesda, MD 20814-3998. Telephone:
301-634-7300; fax: 301-634-7090,
society@ashg.org
or visit ASHG on the Web:
www.ashg.org |
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