NEGC-LEND Planning Meeting
June 20, 2014 via video conference
Attendees:
David Helm, Betsy Humphries, John Moeschler, Leah Burke, Steve Contompasis, Kass
Braden, Karen Smith
Agenda
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Updates from each program
Review to do list from AUCD/NCC meeting, Nov 2013
What are “core competencies” in genetics for LEND trainees
Ethics in genetics – should this be a stand along objective
Potential regional activity
Wrap up and next meeting(s)
The group reviewed their learning objective (drafted initially by Kass) and may come back to it for edits.
Reflecting on activities of the past year
Steve:
 Leah spoke about genetics at a seminar
 One of dilemmas going forward is that language/content needs to be simplified especially in light of
recruiting more diversity. Also hope to bring in more self advocates.
 Teaches Blackboard learning course on epigenetics
 Going to full distance learning in next year
Leah:
 Sally Bliss worked with them re: ethical issues
 discussions about genetic testing and ethics were very good
Kass:
 3-4 sessions in the year on ethics and genetics, no clinical placements (see slides)
o Started with genetics 101
o Inheritance
o Clinical info
o Ethical issues and questions
 Doesn’t go into epigenetics much but there’s a link in her slides that might interest Steve
 Learning objectives:
o To recognize there were many issues in genetics that are not black and white; gave
examples that seemed at first to be black and white, then demonstrated how there could
be controversy
 Consent
 Henrietta Lacks…
 Private profit
 Laws that support genetic privacy
Newborn screening from state to state, etc.
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Betsy and John:
 1 seminar devoted to genetics in the spring (see slides) via lens of newborn screening and PKU
o Developed by John, Monica, Kay Johnson, Wendy Smith; family with PKU also comes
o Readiness quiz
 Doing Team-Based Learning
 Clinical placements with genetics clinics
 trainees working on GEMSS with NEGC – evaluation, social media
David:
 Revolves around 2 genetic counselors as LEND trainees
 David Harris did a core session (mixed review)
 Working with TSC clinic – looking at genetic markers for autism
 Next year will have a genetic counselor coming
Review of AUCD/NCC November 2013 meeting – see Action Plan & Next Steps
Leah and Steve led discussion of action steps from that meeting.
1. Explore existing projects that highlight public policy in the LEND and NEGC to look for overlap.
Update links to the resources to LEND.
Decided this was just general links that anyone happened to find, including links to explanatory pages
Kass did go online to see what had been done in some of the genetics programs. Used as jumping off points
for discussions, but didn’t use directly.
o Found links via Google, YouTube, Ted Talks and some ideas John had sent
Group discussed creating a list of resource list that could be shared between programs.
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would be useful to continually get more links for emerging issues
Kass – would like one-stop-shop where she could find resources that demonstrate what we’re
talking about
Steve –If we intend to create 1 curriculum for all, it would take many meetings like this. If we want
resource list, that’s a different thing.
John – although some at a national level want core competencies, he supports taking approach
that suits us regionally. We could develop page(s) on NEGC website for all to use.
Betsy – learning objective we worked on last year was helpful but may want to identify subobjectives that can guide us (it’s so broad), specific objectives.
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David – landing site for resources would be useful. We would use it in different ways. He would
send students there. Would like a well-vetted site.
Kass – would be nice to use for different audiences, like new physicians, nutritionist. Wouldn’t want
single curriculum but rather the ability to be flexible. Including public policy laws.
John – noted the AAP subgroups have talked about the same kind of need to share slides & info.
Leah – AAP section had repository that was used more at first. The difference was it was sharing
between genetics, didn’t have to keep reinventing the wheel. This is different because it’s providing
material for non-geneticist. Ongoing collaboration that would be very nice.
John agreed. Will bring up again when we look at work plan.
1.5 Facilitate the two genetic counseling students from MA LEND program to come to the NEGC annual
meeting.
Deferred until next year. The timing makes it difficult as AUCD and NEGC both are in April.
Betsy – wondered about connecting gen counselors in MA with idea of collecting genetic resources for nongenetics people? Could we address both at once?
 Leah – they all have thesis projects, not sure of the parameters per school. Would be useful b/c
explaining concepts to non-geneticists is part of what they will be doing
 David – not sure of their requirements. Also has worked with Brandeis. It’s worth exploring.
 John – would be useful to know what they’re expected to do
2. Vermont to analyze curriculum to talk about what genetics needs to be known to manage conditions
in the medical home
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Steve found a committee on genetics in AAP, which led him to GPCI.
They’ve done this internally for VT to an extent. Is this meaningful to continue for the region?
Kass said they do a fair amount on med home in their curriculum but not on this specifically. Not
sure what people need to know, liked going to AAP.
David agreed there wouldn’t be big enough payoff
Group agreed to drop this task
2.5 Assist or facilitate Kass from UMass to connect with other genetics programs particularly in CT/RI
John noted that Kass doesn’t have a formal connection with a clinical geneticist. Would that be helpful?
 Kass – it may in the upcoming year but not sure; she is retiring in November
 Shriver Center is 50 mi from UMass where they do clinical work
 Leah suggested Jody Hoffman at Tufts
 David Helm is looking for someone new but is working it out
 John – suggested a genetic counselor be teamed up, and the group liked this idea.
3. David Helm to look at the possibility of long distance involvement of genetic counselors for LEND
David was to look at distance ed, but thought Shriver Center might be more likely.
 Kass – Shriver does it a lot but not on genetics
 David forwarded Shriver newsletter to John to get an idea of their scope
 John would like us to explore it more. David agreed NEGC could be the genetic part and they could
be the tech part. Kass will talk to Shriver.
Having no genetic counseling schools in ME, VT and NH makes it hard. Should we be doing something to
address this barrier? Would Kass be interested?
 Theirs is non-clinical so may or may not be of interest.
 Kass agreed to let BU and Brandeis know when their new sessions are starting.
David meets with BU this summer, will bring up NEGC’s interest in working with gen counselors – what do
they know of the NEGC
Discussion: What are the “core competencies” in genetics for all LEND trainees / what do we want to do
next year?
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Create landing site on NEGC page for trusted materials
vet websites with John and Leah for validity
Share curriculums, learning objectives and materials
do it annually at this same time so we can reflect on year and include in planning for next year
Group discussed to what degree they should use AUCD resources.
 John – materials on AUCD aren’t comprehensive but a pretty good start
 Note: Monica will report on this group’s progress on the AUCD/NCC call coming up June 26
o Request time for work, and quiet space
Betsy – could we meet 2 objectives at once: provide training for fellows by creating something that we
need? Kass agreed they may have students who are interested.
 Suggestion was made to create a collection of project ideas that could be used by LEND trainees.
For ex:
o Universal design
o Universal access for new projects in community
Steve – would like a small product of our meeting today. Would also like our NCC/LEND meeting in
November be a working meeting – bring curriculums, links and resources. John suggested Monica make this
suggestion for Nov’s agenda development to NCC on June 26th.
 Kass noted that she feels we are already producing something “solid” today, for ex., a vetted site
and collaborating on curriculums. Steve agreed that if we share as planned we’re doing all right.
Ethical issues in disability and genetics – should this be a “stand along” objective?
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Kass – yes
Steve and Leah – yes
NH – agrees this is important but doesn’t have this in the curriculum
Every group doesn’t have to do every objective, but Kass thought this ought to be one of the options in our
objective. John and Betsy agreed.
Wrap up and Next steps
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All will send materials and learning objectives to Karen by July 14 (start with just learning objectives
if needed)
NEGC will create a landing spot on website
John and Kass will vet objectives and curricular materials, both for appropriateness for audience
and for accuracy, over the summer
David will talk to BU genetic counseling training directors about working with LEND and NEGC
John will do action step re: AUCD
Continue to think about recruiting LEND trainees into work we need done for NEGC
o Leah and Steve will talk about this
John will turn this discussion into work plan, send to Leah as co-chair then to the group.
Monica has June 26th call with NCC.
Scheduling future meetings: the group agreed that 2nd week of June along with the November AUCD/NCC
meeting are the best times.
 June is a good time to reflect on the past year and there still time to make changes for the fall
 Leah agreed. Works better in person. Sharing by email and then meeting would be good.
 Need to work around AAIDD meetings for David (coming up next week)
What worked well, what didn’t
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Betsy – video conference worked; helpful to have agenda ahead of time; productive, forward steps
Leah – appreciated not driving though likes in person. Good meeting, good interactions.
Steve – agreed. Technology worked with one glitch with echo.
Kass – video was confusing on her end and took hours to prepare
Leah – it helped when Bill said it was Cisco Jabber
Steve – easier there because they utilize it with med students; Adobe Connect may be simpler.
David – video took a while. Did it from his laptop. Bill helped greatly though took lots of time.
Content of call was good. Steps forward.
John - formatting worked pretty well, saved driving time