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Genomics Forum Blog
With the completion of another successful APHA meeting, we enter the third official year of the Genomics Forum. First and foremost, there are thanks in order. Jody Platt, now Past Chair, played an integral role in the birth of the Forum and led its expansion to a successful organization of more than 800 members. I was struck this year by the immense presence of genetics and genomics, where little existed as recently as four years ago. The difference is staggering. The challenge before us is to continue the Forum's growth, both in terms of membership and also in collaborations and idea generation. Truly, we must ask the question, “what is public health genomics?” To answer this question, we need to be good listeners. We must listen to each other, to our colleagues in public health, and to the individuals, families and communities we serve. This will prove to be a year of decision-making for the public health genomics community. With major projects such as GAPPNet and GEDDI laying out paths before us, we must decide what our role will be. The first step must be to take an honest look at our strengths and the challenges before us. We have many strengths in: - Early disease detection and diagnosis
- Understanding relationships between genetics, lifestyle, and environment
- Prevention and risk assessment
- Integration of services
We also have many challenges, such as: - Health and risk communication
- An unclear future of our workforce and competency
- The relationship between the hype and reality of new technologies
- Reimbursement and regulation
- Access to services and disparities
What challenges do you face in your work? Your experience will help guide the direction of our forum and of our work for the year to come.
The Annual APHA meeting is one of my favorite times of year. It is by all accounts the time that – ready or not- we get to look back to see how far we’ve come, and aspire towards new goals for the future. While we are still a young, loosely-knit, organization with unmet goals, we’ve come a long way. We’ve grown exponentially, our program is unique among genetics and public health conferences bringing together diverse presentations, scholars, practitioners, and stakeholders, and we have a good time. Dean has recently posted two blogs to this site that adeptly speak to this looking ahead and looking behind that comes this time of year. Adding to that, whether you participated this year in person, by phone, or in spirit, Thank you.
On a personal note, I’d also like to thank you for providing me the opportunity to Chair this group for the past two years. I often get caught at the end of a Forum conference call saying that “This committee, or this type of call, or the people on the call, are my favorites...” While logically, this can never be (there can be only one favorite), it’s a true statement nonetheless. The Forum is (one of) my favorite(s) because of the members, because of you.
Another reason I’m so fond of the Genomics Forum is that it is a space to develop what an acquaintance of mine once called the ultimate skill in public health: The ability to speak with and to the head, the heart and the pocket. I believe the Forum membership does just that – From the head, we are deep in the knowledge and intricacies of genomics and public health having members who study and work in genetic epidemiology, behavioral sciences, genetics education, public health practice, nursing, and medicine (just to name a few).
And we know the language of the heart: Debbie Klein-Walker, a past-president of APHA, and supporter of the Forum as it was being officially reviewed by the APHA governing bodies, described APHA as a volunteer organization of many passions making it at once a vibrant and exciting place to be, as well as challenging waters to navigate. The Forum, happily, is one of those passionate groups adding vibrancy to the world’s largest and oldest public health professionals organization. Over the past two years I have heard from many of you about where your passions lie – in your concerns and hopes for what genomics and public health might do together, in your drive towards assuring genomics helps in eliminating health disparities, in a diverse and competent public health genomics workforce, in policy development that supports the vision of public health of healthy people in healthy communities.
And, thankfully, we are a group that has a commitment towards looking into our pockets to bring what we can to the table. Whether you have reviewed abstracts, led a working group or committee, sent an email to find out what exactly it is that we do, or are still hoping to find some time for the Forum later this year, it all contributes to where we are, and where we might end up at this time next year. And the year after that.
I’m looking forward to what our heads, our hearts, and our pockets come up with next.
Please help me welcome Nicole Exe to the Genomics Forum leadership team. Nicole Exe is the Secretary of the Genomics Forum. She is currently a research associate at the Center for Behavioral and Decision Sciences in Medicine (CBDSM) at the University of Michigan Health System. Her work focuses on how patients understand, react, and make decisions about their health care including genetic testing. She has a Master's in Public Health in Health Behavior and Health Education with a concentration in Public Health Genetics and a Bachelor's in Biology both from the University of Michigan. She has previously been an intern at Genetic Alliance, worked for the Center for Public Health and Community Genomics on the Midwest Genomics Forum, and also taught genetics through the University of Michigan biology department. Genetics has been a passion Nicole has been pursuing for many years. Nicole's current work for CBDSM includes a project studying communication methods and decision making around genetic tests with veterans and their families.This research is one of the necessary steps to make genetic testing for common diseases in the general population a reality. As the Secretary of the Genomics Forum Nicole’s will be responsible to assist committee chairs to schedule committee calls, send out call information, and take meeting minutes. If you have any questions about the Forum or related activities please feel free to contact Nicole at nexe@umich.edu. She can either answer your question or find someone who can.
A few weeks ago, the Genomics Forum’s membership converged in Philadelphia for the APHA annual meeting. I was impressed and proud of the Forum’s presence at the meeting. Throughout the meeting, I found myself in awe at the high level of academic discussions around numerous topics of genetics and genomics in public health, particularly at both our Business Meeting and Poster Session. The interdisciplinary nature of our group, and everyone’s individual expertise stretching across many fields, makes us poised to further integrate the Forum into APHA, and beyond. To be a witness to this and to come to this realization was my take-home experience from the Annual meeting. What was your take away message? What did you find interesting, impressive, exciting, etc? Was it an overarching theme or topic? A specific presentation? A conversation had at a social function? -Dean Hosgood
As 2009 is coming to a close, there have been some exciting new developments in the world of genomics. Last month I attended the Genomic Applications in Practice and Prevention Network (GAPPNet) inaugural meeting in Ann Arbor, Michigan. The meeting was convened by the CDC Office of Public Health Genomics, UM Center for Public Health and Community Genomics, NCI Division of Cancer Control and Population Sciences, NHGRI, and AHRQ. GAPPNet is a collaborative partnership of stakeholders “working together to realize the promise of genomics in healthcare and disease prevention.” The first day consisted of presentations from a number of academic, government, non-profit, and industry representatives. The second day was dedicated to working groups who were tasked with envisioning GAPPNet structure, outreach, and potential products or services. On Day 2, one GAPPNet attendee spoke about genomics research and practice using a rowing metaphor. Currently we are all in various boats and we’re rowing in directions and at tempos dictated by our unique missions, visions, and funding sources. We don’t really know a lot about what’s going on in other boats and we may or may not be rowing in the exact same direction. An organization like GAPPNet could help to get us all moving in the same direction—streamlining the pipeline from “bench to bedside” and beyond. Broadly, its activities would encompass four domains: Knowledge Synthesis and Dissemination, Development of Evidence-Based Recommendations, Translation Research, and Programs to Enhance Practice, Education, and Surveillance. As an opening salvo, GAPPNet collaborative efforts will produce a searchable online database of genomics scholarship and funded projects within the next year. This type of database would be highly beneficial for those seeking multi-disciplinary collaborators, networking, or ideas for future projects. Anyone interested in learning more about GAPPNet activities and membership should visit their website: http://www.cdc.gov/genomics/translation/GAPPNet/index.htm -Heather Honoré
After months of preparation, the Genomics Forum’s Program Committee’s has finalized the business meeting and scientific sessions for APHA’s 137th Annual Meeting, being held in Philadelphia, November 7th - 11th. As you plan to make the most out of your APHA experience meeting this year (see James O’Leary’s post, The Infinite Meeting), please keep in mind all of the Forum’s activities: The Forum will be kicking off its Philadelphia experience with the Genomics Forum’s Annual Business meeting at 8am on Sunday. All are invited to participate in this great opportunity to meet and network with public health professionals who are interested in genomics. This is also the time of year when each committee will update the general membership on their activates and seek your input to achieve their goals and objectives for the coming year, either through brainstorming or becoming involved via a leadership position. We will round off Sunday with the Forum’s poster session from 2:30-3:30, which will be a broad overview of many timely, relevant, and important aspects of genomics and genetics research in public health settings. Throughout Monday, Tuesday, and Wednesday, the Forum will be hosting 7 oral sessions, as well as co-sponsoring an additional 10 sessions with various APHA groups. The first oral presentation, “ Novel applications of genomics and family health history in public health”, will begin at 8:30 Monday morning. This session will explore the way that family health history is currently being used, as well as the influence that race and ethnicity plays, in framing ideas around personalized medicine and genomics. The second oral presentation, “ Communicating genetic and genomic risks to the public” , will be Monday at 10:30. This session will include presentations on both communications about and understanding of genetic information. The utility of a toolkit in facilitating discussion within families and with healthcare providers about family health history will be examined. Additionally, the impact of both age and reported racial background on understanding of genetics will also be explored. Finally, a report on the factors influencing interest in SNP testing for colon cancer risk will be given. Implications for the development of public health policy about how to best communicate genetic information will be presented. The final oral presentation on Monday is “ Genomics and health disparities” at 4:30 pm. This session will examine the problem of healthcare disparities within the context of genetics. Barriers to adequate services can be concrete, such as the geographical separation of a population from available sub-specialists. Complex language and high grade level readability for information from direct to consumer genetic testing companies can lead to inadequately informed consumers. The inclusion of minorities in research is also critical if the entire U.S. population is to benefit from advances in genomics. Finally, the importance of exploration of a minority’s understanding of genetics is underscored by a presentation discussing the impact of Korean-Americans’ concept of “matching” on their willingness to be enrolled in the National Marrow Donor Program. We will start Tuesday off at 10:30 with the oral session entitled “ Translational research in genomics and public health education”. In this session, explorations of and possible solutions to these needs will be presented. Recently, three recommendations from the EGAPP (Evaluation of Genetics in Practice and Prevention) initiative were published, representing a step forward in establishing a mechanism for evaluation of the utility of research tests in clinical practice. Another presentation will highlight the importance of establishing ethical and legal guidelines for the use of the large-scale genomics data-sets that are critical for this field. The Personal Genome Project will be explored as a positive example of responsible research. The impact of genetic information on individuals and their families must also be explored as an essential component of translation. The importance of a family history of lung cancer on risk perception for this condition will be presented, highlighting the importance of investigation of subgroup perceptions when considering policy and education strategies for improving health outcomes. Finally, findings from a prospective study on communication of parental genetic information to their children about genetic test results for BRCA1/2 will be discussed. Tuesday afternoon will include back-to-back sessions on direct to consumer genetic testing. The first session will being at 2:30 ( Direct to consumer genetic testing and personalized medicine: What does it mean for the public’s health?) and will be a panel of complementary speakers addressing key public health research and policy questions from several interdisciplinary perspectives. They will address current scientific progress in the field and its potential clinical and policy impacts, impact on public health of direct-to-consumer testing, the industry perspective on incorporating genomic information into screening and treatment strategies, and the potential for health disparities in the widespread clinical adoption of genetically-targeted therapies, including the ethical, legal and social issues. The second session will begin at 4:30 and is entitled “ Genetic testing and information available direct to consumer”. This session brings together genetic counselors, a molecular biologist, and a researcher with expertise in carrier testing in the Ashkenazi Jewish population to present the scientific, consumer, and ethical aspects of providing genetic information directly to consumers. How to ensure the DTC market is properly managed will be discussed. Finally on Wednesday morning, we will host our final oral session at 8:30 “ Public education, social justice, and advocacy in genomics”. This session will focus on various contributions to our understanding of the importance of public education and advocacy to the field of public health genomics. The Access To Credible Genetics Resources Network (ATCG-RN) project, the BioCONECT curriculum, the Advocacy Coalition Framework, and the importance of social marketing that addresses the needs and interests of a specific community (i.e. the Deaf community as an example of a cultural and linguistic minority) will be discussed. For the complete list of Forum’s programs, including the co-sponsored sessions, please be sure to visit us on the APHA website. See you Philadelphia! - H. Dean Hosgood
*Each committee is looking for new co-chairs!*The Forum is looking for a new Secretary!
If you are interested in these positions or would like to nominate someone please contact James O'Leary (Co-Chair) at joleary@geneticalliance.org. Please note the call for nominations will be sent out by e-mail in October.
The Forum had a GREAT general membership call on Wednesday. It was wonderful to speak to all of you who joined us and I wanted to do a quick recap for those of you who were not able to.
We spent some time discussing the upcoming annual meeting including what sessions will be held and the schedule for the day of the business meeting. The Membership and Communications Committee is working to review and develop new materials to hand out at the meeting. We will also have live blogging throughout the meeting to keep those who cannot be in PA up to speed! This is a new adventure for the Forum and we hope it succeeds and is helpful to our members. Another new thing for the event this year is the Policy Committee has been working very diligently on a policy for APHA. The committee will be brining the draft to the meeting to get any feedback members have on improving it before the final submission in winter.
Summary: *Business meeting is coming up! We hope to see you all there or have you join us online for the live blogging experience. *Elections are fast approaching and we are starting nominations soon! (See additional post for more information) *Bi-weekly e-mails are going to begin being sent to update members on what is currently being posted on our blog *For minutes from this call which include much more detail please visit our website at www.GenomicsForum.org
As conference season approaches once again, I find myself wondering how I can get the most out of each meeting. From presenting, to networking, to exhibiting, each conference allows me to reconnect with colleagues, meet new people in my field, and gather valuable information. But, why do I get the feeling that I’m starting over with each new meeting? Why isn’t there any continuity? How can the lessons learned from one meeting build naturally into the next?
As with any question, there is always a personal and a systems level answer. I think that personally, I can bring my experiences with me and share them. I can also follow up with contacts, invite people to future meetings, and send them updates using the tools of the Genomics Forum and Genetic Alliance.
I am also interested in what we can do to stop being separate organizations and start being one community. How do we systemically maximize the effort that we are each expending every year? Here are a few ideas I’ve heard about or have been pondering lately. I invite you to post some of your own.
1) Open space technologies
Most meetings I attend have an abstract process that requires presenters to determine relevant topics a year before the meeting. What if we injected some openness into the meetings that let people self-aggregate around topics they think are important? We can use open space technologies to allow participants to choose in the moment, when they’re surrounded by the information and their neurons are firing.
2) Repeating themes
We all attend multiple meetings every year where we hear the same topics over and over again. There must be a better way to combine all of those presentations into a more productive format. It would be interesting to look at each season’s meetings, and then invite the speakers to give their presentations in a webinar format. Think of them as multi-disciplinary informational webinars that devote significant time to the question, “What do we do next?”
3) Two places at one time
There have been some interesting forays into virtual meetings in the past few years. In addition, we have seen numerous organizations blog, tweet, and stream updates about their meetings as they are in progress. It is time to take these efforts to the next level. How can we look at creating a seamless platform between meetings? How can we link up concurrent meetings so that participants can interact with each other? How can we truly involve participants that cannot attend due to travel, disability, or conflicts? A reality is that many organizations make money off of their meetings, but we can be more efficient and creative with how we look at participation.
I recently attended the Third Annual National Conference on Health Communication, Marketing, and Media. As a professional communicator, I was eager to hear the presentations in the conference, especially given this year’s tagline: participation powers prevention. Although I gained deep insight into the kind of health communication research and projects taking place around the country, I was most struck by the integration of new media strategies in the overall conference program.
I’ll share just a few examples in this post. First, before attending the conference I received an invitation to join a Ning group created specifically for conference participants. Nedra Weinrich initiated the community at http://nchcmm09.ning.com/. Events, blogs, tips, networking, and discussions started within this online community before the conference and have been continuing in the days after the meeting. Second, conference participants used Twitter hashtags to aggregate live, conference-related tweets. The tweet archive including 500 tweets from the meeting is available at http://healthbirds.com/tagsearch.html?tag=NCHCMM09.
The outcome of these social media tactics (which include much more than the two examples I gave above) created enhanced access, information sharing, networking, and creativity among people who were interested in the conference, regardless of their ability to attend in person. It is a case study for how interdisciplinary dialogue on the issues we’re all facing in health can be facilitated through emerging technology.
But, it also points to the possibilities for using emerging technology in public health and genomics. CDC’s use of social media in response to H1N1 Flu is a case for continued exploration into social media’s application to public health. Check out http://www.cdc.gov/socialmedia/ for more information on how CDC is using social media in public health. If you’re interested in integrating some of social media strategies into your professional toolbox, take a look at http://mashable.com to learn more. Their how to section may be a good starting point for beginning your research. -Tiphané Turpin
The Membership and Communications Committee is working hard to increase membership and promote our new website. We have a few projects to work on and are looking to move our committee calls to be more accessible to members who wish to join us. We are currently looking to schedule our next meeting time by using a Doodle Poll. If you are not on the Membership Committee but wish to be on our calls in the future, please respond to the Doodle Poll by click the link ( http://www.doodle.com/k79w35h6pc396tbi) or you can e-mail Tiphane or myself if you have questions or concerns about making future calls. We look forward to having any of you on future calls!
The Policy Committee has been hard at work revamping the piece on Genetics and Health Literacy. We've been making great progress! Our goal is to have a completed second version available for the membership as a whole by the November meeting at APHA. The committee has also discussed starting a second policy piece surrounding the theme of personalized medicine. We're looking for someone to start pulling together a few ideas - if you're interested please let the committee leadership know. We will be having our next Policy call on Wednesday August 12th at 3 (eastern). Anyone interested in seeing the progress so far, contributing to the development of a specific policy, or other Policy Committee interests in general, whether you're regularly on the calls or not, should feel free to join us!
We recently sent the following announcement to APHA to publish in the e-newsletter Inside Public Health. We will also forward this statement to the Government Relations Office to incorporate into their letter of support to Congress for the nomination. Are there specific ways in which you believe this nomination will support the goals of public health? We have been asked to forward bullet points in addition to the statement below, so please share these thoughts/comments. --- Draft Statement from the Genomics Forum Regarding Nomination of Francis Collins to lead NIHThe Genomics Forum of the American Public Health Association commends the nomination of Francis Collins, M.D., Ph.D., as the new director of the National Institutes of Health (NIH). Like the members of the Genomics Forum, Dr. Collins also realizes the growing influence of genetics and genomics on everyday life in America. He works diligently to assure that this influence contributes meaningfully to the public health vision of health for all. Dr. Collins' record of support for the responsible integration of genetics and genomics into individual and community health marks and exciting moment for the future of NIH. --- NIH Official Announcementhttp://www.whitehouse.gov/the_press_office/President-Obama-Announces-Intent-to-Nominate-Francis-Collins-as-NIH-Director/--- How to post a comment (It's easy!):Click on 'comments' (below) and this will open a text box for you to write your comment and 'sign' it as you wish. Click publish and you are done! We look forward to hearing from you! -Jody Platt
I’ve spent much of my career trying to understand the roles of genetics, and now genomics, in improving public health.* How genetics/genomics concepts and terminology enters the public discourse, the meanings non-scientists attach to this information, and how this information impacts decisions to participate in research and health services is important, but still relatively uncharted territory. Much of what the public knows and understands about genetics and genomics appears to be an interesting admixture of grade school science and exposure to popular culture and media (Bates, 2005; Lanie et al., 2004; Nelkin & Lindee, 2004; Richards, 1996; and others). Fictional book characters in The Time Traveler’s Wife and Harry Potter series often run headlong into genetic/genomic health, social, and ethical issues. Hollywood films are similarly chock full of modern or futuristic genetic technologies and characters weighing the risks, benefits, and morality of these innovations. Titles such as GATTACA, Jurassic Park, The Island of Dr. Moreau, and the Resident Evil series do brisk business on Amazon.com. Even television has gotten into the act with offerings ranging from cholesterol drug commercials to the African American Lives series. Everywhere they turn, the public is bombarded with real and imaginary genetic/genomic information and technologies. In the post-Genome Project era, we in genetics/genomics and public health have a duty to ensure that the public has the knowledge and skills, or genetic/genomic literacy, necessary for informed decision-making. Whether revised K-12th science and health curricula or some type of comprehensive public health genomics education, we will have to decide what constitutes functional genetic/genomic literacy and how we are going to deliver literacy-building programs and services. These are very complex questions. Therefore, I “second” James O’Leary’s call for multidisciplinary collaboration. Let’s roll up our sleeves and get to work! -Heather Honore
*The views expressed in this blog entry do not necessarily reflect those of the U.S. Department of Veterans Affairs, the Veterans Health Administration, the Michael E. DeBakey VA Medical Center, or Baylor College of Medicine.
Last week, I attended Genetic Alliance’s three annual events: Genetics Day on the Hill, Gene Screen, and the 2009 Annual Conference, Discovering Openness in Health Systems. During these events, I was struck by the power of genetics and genomics to promote collaboration across multiple stakeholder groups, diseases, and even perspectives. At its heart, Genomics Forum is a direct manifestation of our wish to integrate genetics and genomics into the broader health community and infuse our work with the knowledge and insight of the whole health system. One of our toughest challenges is "knowing what we don't know" about how our work relates to and impacts other areas of public health. The beauty of new technologies, integrated health systems, and collaborative models is that we don't have to know everything. To tap into the greater knowledge of our colleagues, our patients, and our communities, all we need to do is let down our defenses and dissolve the boundaries between us and them. In my work with Genetic Alliance, we are quick to point out that there is no "us and them," but only a "we." In public health, the word genomics can often be siloed into the realm of “them,” viewed as the harbinger of stem cell research, cloning, and genetically modified foods. But we know that genetics is an integral part of who we are, has transformed our knowledge of disease, and holds untapped potential for diagnostics and treatments. Still, the vast majority of work is yet to be completed and there is much that the genetics community can learn from its partners in public health. "We" are in this together and it is "our" health at stake.
Aaron Goldenberg, Chair of the Forum's Special Projects Committee, is one of the authors on a new article in Public Health Genomics titled " Not Without my Permission: Parents' Willingness to Permit Use of Newborn Screening Samples for Research." This article summarizes results from an internet-based research study on parents' attitudes toward using blood spots from newborn screening for research as well as allowing storage of the spots. I enjoyed this article because it gives a representative perspective on a present issue in society. Currently, the state of Michigan is keeping stored blood spots indefinitely and allowing research to be conducted on them, yet many parents are unfamiliar with this entire process (let alone even remembering the blood spot was taken after birth). This is a pressing issue that should be thought about carefully by every individual in the United States. This article is a great first step in understanding parents' attitudes toward the storage and use of their child's blood spot samples for research.
The Genomics Forum began three years ago as a small group of people interested in the interaction between genomics and public health. When we had meetings I could email people individually. We set up a website where we could post meeting agendas and minutes for the single organizing committee. And then the Forum grew.
Today, we have four functional committees, a Steering Committee, and three working groups. Instead of ~20 members, we have ~400 active members. And today, I’m happy to say we have a website that can better address our larger scope. - The site also has all the newest information about our great program being planned for the APHA Annual Meeting (November 7-11, 2009 in Philadelphia). (Have you registered yet?)
Our Membership and Communications Committee and staff at the University of Michigan’s Life Sciences and Society Program and Center for Public Health and Community Genomics have been working hard to implement these new features and to bring us our new look. MANY THANKS FOR THIS GREAT WORK.
And we hope you’ll keep coming back to the website.
A couple times a week, our members will share information about current research and issues in practice, react to emerging news stories, and provide updates on our common projects and upcoming and recent events. We have a wealth of experience and expertise our membership brings to the blog in areas such as: - Genetic epidemiology
- Genetic services
- Genomics and public health services
- Healthcare
- Ethical, Legal, and Social implications
- Environmental health
- Education
- Community engagement
- Epigenetics
- Social justice
- Biobanking
... and much more...
My thanks to our committee leaders who have already agreed to help keep our blog dynamic by posting on a regular basis. It is my hope that other members will volunteer to post (or cross-post) to the Genomics Forum -- Having just about finished my almost-first blog post ever, I can attest to the fact that it's really pretty easy.
The Forum’s blog and website should continue to be a supportive feature of our work over the next few years. Please let us know how we’re doing in this regard, and suggest ways we can improve the site’s accessibility and usability.
Are there topics you'd like to see featured here in our blog? Are there people you'd like to invite to post?
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