Rex Chisholm: All right, I'd like to welcome everyone to
Genomic Medicine V. My name is Rex Chisholm and I'm going to co-chair this meeting together
with Teri Manolio from the Human Genome Research Institute.
I want to thank everybody for coming.
We think we've assembled a really great meeting today that we're all going to learn a lot
from.
This is the fifth in a series of meetings, and we've actually planned out as far as a
sixth meeting, which you'll hear about it a bit.
Genomic Medicine I was held in Chicago in June of 2011, and that was really an attempt
to get everybody that was actually -- from institutions that were actually doing genomic
medicine implementation projects to just hear from each other and see if there was enough
there there for us to move forward with activities in the area of genomic medicine.
We were actually all very impressed with how much there there was, and that was recently
published as a very nice paper summary that came out of that.
Genomic Medicine II was held in December of 2011 here in Bethesda, and the goal there
was to develop collaborative projects and task forces, and there was a lot of time spent
thinking about what the areas that needed attention, if we were actually going to implement
genomic medicine going forward.
Genomic Medicine III held in Chicago in May of 2012 was one of the first follow-ups from
what we learned in Genomic Medicine II, which was that we needed to really think about engaging
stakeholders from the healthcare enterprise, and we had some of the leading organizations
that actually provide health care who were very actively involved in that session.
GM IV was held in Dallas last January, and that was the second phase of that sort of
plans that emerged from the GM II meeting, which was the need to engage professional
societies and other disease-oriented organizations, and understand what their interests were in
the area of genomic medicine, and what they thought about implementation.
And a very exciting activity that emerged from that was a steering committee that's
actually coordinating activities and leveraging the ongoing interactions between those professional
societies, and you'll hear a little more about that later.
So then this meeting is also a follow-on from one of the areas that we thought was really
important in the Genomic Medicine II meeting, which is really to begin to understand the
U.S government agency perspectives.
Obviously, the federal government's an important participant in health care, provides a lot
of health care itself; we're delighted to see so many representatives, for example,
from the Armed Services who are here today that have huge healthcare operations.
So our goal here is to hear from you, and to begin to learn a little bit about what,
from your perspective, current needs and gaps are in applying genomic medicine; to understand
what activities you have in progress or are planning; to understand what obstacles you've
encountered or anticipate; to understand how NHGRI and the NIH can facilitate or expand
your activities if that's helpful to you.
One of the roles, as you can tell from this short introduction already, is that NHGRI
has played an important role as a convener of groups, and that seems to be -- actually
been very helpful.
And then who else should be at the table that isn't at the table as we move forward?
So that's what we hope to be able to discuss during the day.
And then we have some thoughts about what some possible outcomes might be, but these
will get developed during the course of the next two days.
Always white papers seem to be an important element to think about what the needs in the
U.S. are and possible approaches, and you were all provided in advance of this meeting
some information about federal or national approach that the U.K. has taken to this project,
and, actually, GM VI is going to be a follow-up with international groups and what their activities
are in the area of genomic medicine.
We hope to find and identify commonalities between the agencies that are presenting here
and see if we can expand those into collaborative activities.
We want to hear about initial use cases that we might come to agreement that are things
that we should pursue.
We should think about how to plan communications and collaborations across agencies as we move
forward.
One possible model will be this steering committee approach that we've taken with the biomedical
-- professional societies.
And needs and goals for interaction, and especially as we think about the international meeting,
which will be held in the fall here in the D.C. area.
So you'll hear more about that in the future.
So that's what we hope to accomplish in the next two days.
It's a big agenda, and we really look forward to a very interactive discussion.
There are presentations that people will use to kick off, but we really -- the most important
thing that we've found in all the genomic medicine meetings are the discussions that
happen around that.
So with that introduction, Teri or Eric, do you want to make any comments?
Teri Manolio: Sure, and thanks for the nice introduction,
Rex, I think you've covered the most important points, except for one, which is that we are
being videotaped, so that you all are aware of that.
Actually, we are being live streamed, so if you are somewhat schizophrenic, as I am, and
want to watch yourself on the live stream while you're talking, feel free to do that.
And we will make all of these videos available afterwards.
So, Eric?
Eric Green: I just want to express my appreciation to
Rex and to Teri for organizing this meeting.
As you see, it's a series.
The series is, in many ways, overseen, and sort of the long-term planning of this falls
under the auspices of a standing working group we now have, a genomic medicine working group,
which is a working group of the National Advisory Council for Human Genome Research, which is
basically the advisory council for our institute, NHGRI.
It was recognized a couple of years ago that genomic medicine being a key focal point of
NHGRI's mission, that seemed important with many new and quickly changing things going
on in that area, that it was important for us to establish a working group of our council,
to really help be, in many ways, a scouting party, if you will, for what the needs are
and how the Institute could have its greatest impact.
And these meetings are a major part of that scouting activity, if you will, reconnaissance
activity.
So we are picking areas that we think are important for us to learn about.
As Rex said, we do see this as much an important convening function, where we're bringing groups
together that maybe otherwise wouldn't be getting together in a meeting, and seeing
if common areas emerge from that, or common things that we could be doing and being helpful.
So we very much want your input; I know the members of the working group who are here
would be very interested in any feedback about things that they could be doing as a workgroup,
and that NHGRI could be doing as an NIH institute.
So I look forward to the next couple of days, thank you for coming.
Rex Chisholm: Yeah, so just so that people at least can
put a name with the face, we'd like to do a very brief round of introductions with everybody
here.
Obviously, that would take a long time if you just said much more than name, rank and
serial number, so if you could just indicate who you are, institution you're here representing,
that would be very helpful, and we'll start at the front of the inner table.
Laurence Meyer So I'm Larry Meyer, and I'm with the VA.
Cecili Sessions: Cecili Sessions, Air Force Medical Support
Agency.
Steve Phurrough: Steve Phurrough, CMS.
Elizabeth Mansfield: Liz Mansfield, FDA.
Carolyn Clancy: Carolyn Clancy, Agency for Healthcare Research
and Quality, or AHRQ.
Muin Khoury: Muin Khoury, Centers for Disease Control and
Prevention.
Jessica Moline Jessica Moline, Cleveland Clinic Foundation.
Murray Brilliant: Murray Brilliant, Marshfield Clinic Research
Foundation.
Eric Green: Eric Green, NHGRI
Teri Manolio: Teri Manolio with the Division of Genomic
Medicine at NHGRI.
Rex Chisholm: Rex Chisholm, Northwestern University in Chicago.
Geoffrey Ginsburg: Geoff Ginsburg, Duke University.
Brad Ozenberger: Brad Ozenberger, NHGRI Division of Genomic
Medicine.
Marc Williams: Marc Williams, Geisinger Health System.
Dan Roden: Dan Roden, Vanderbilt.
Wayman Cheatham: Good morning, Wayman Cheatham, U.S. Navy Medicine.
Bruce Doll: Good morning, Bruce Doll, Navy Medicine.
Jonathan Forsberg: Jonathan Forsberg, Naval Medical Research
Center.
Debra Leonard: Debra Leonard, University of Vermont College
of Medicine, representing the College of American Pathologists.
Naomi Aronson: Naomi Aronson, Blue Cross and Blue Shield
Association.
David Lebrack: David Lebrack [spelled phonetically], FDA.
Rhonda Cooper-Dehoff: Rhonda Cooper-Dehoff, University of Florida.
James Hoffman: James Hoffman, St. Jude Children's Research
Hospital
Ronald Przygodzki: Ronald Przygodzki, VA Office of Research and
Development.
Adam Berger: Adam Berger, Institute of Medicine.
Joan Scott: Joan Scott, National Coalition for Health
Professional Education in Genetics.
Federico Innocenti: Federico Innocenti, University of North Carolina.
Amanda Elsie: Amanda Elsie [spelled phonetically], University
of Florida.
Cluston Turner: Cluston Turner [spelled phonetically], Walter
Reed National Military Medical Center.
Mary Williams: Mary Williams, Association for Molecular Pathology.
Kristin Maloney: Kristin Maloney, University of Maryland.
Maura Dollymore: Maura Dollymore, Coast Guard Health, Safety,
Work-life.
Jeff Salvon-Harman: Jeff Salvon-Harman, Coast Guard Operational
Medicine.
Farin Bhodinger: Farin Bhodinger [spelled phonetically], Icahn
School of Medicine at Mount Sinai.
Mark Ratain: Mark Ratain, University of Chicago:
Thomas Lehner: Thomas Lehner, NIMH.
David Ledbetter: David Ledbetter, Geisinger Health System.
Maureen Smith: Maureen Smith, Northwestern University.
Catherine Witkop: Catherine Witkop, Air Force Medical Support
Agency.
Ian Moore-Perry: Ian Moore-Perry, NHGRI.
Roneen Ni: Roneen Ni, NHGRI.
Lynn Dressler: Lynn Dressler, Mission Health, Asheville North
Carolina.
Tim Wiltshire: Tim Wiltshire, University of North Carolina.
Peter O'Donnell: Peter O'Donnell, University of Chicago.
Ronald Miller: Ronald Miller, working with the Air Force.
Janet Williams: Janet Williams, Geisinger Health System.
Jean Jenkins: Jean Jenkins, NHGRI.
Ithicard Caloul: Ithicard Caloul [spelled phonetically], Mayo
Clinic.
Anastasia Wise: Anastasia Wise, NHGRI.
Derek Scholes: Derek Scholes, NHGRI.
Sarah Harding: Sarah Harding, CMS.
Scott Devine: Scott Devine, University of Maryland.
Sarah Knight: Sarah Knight, Department of Veterans Affairs.
Mike Heathcote: Mike Heathcote, Northwestern University, and
if you need anything over the next two days, you can contact me.
Eric Green: Pearl.
Pearl O' Rourke: Pearl O'Rourke, Partners Healthcare, Boston.
Monica Giovanni: Monica Giovanni, Geisinger Medical Center:
Rex Chisholm: I think we've got everybody, was there anybody
we missed?
Was there anybody we missed who just came in?
Jeff Manch: Jeff Manch [spelled phonetically], University
of [inaudible].
Rex Chisholm: All right, then we will move on with the agenda,
and introduce Geoff Ginsberg form Duke University, who is going to talk about the value of integrated
strategy.