pgEd in your community
pgEd’s community engagement team was first launched in Sept. 2017 by our former Director of Community Engagement, Fabienne Mondesir, and included former and current staff members Clifford Jones (CJ), Florcy Romero and Vika Parris. The team’s mission is to raise awareness in underrepresented Boston neighborhoods, about the benefits, concerns, and social implications of genetic testing. We also inform the community about the rise of new genetic technologies, including cutting edge developments in precision medicine. Lastly, pgEd offers one-on-one meetings to community leaders, informing them more about pgEd’s goals and strategies. These meetings help open the door for pgEd to present and/or participate.
Some of our participation in the community involves going into already existing groups and spaces to participate in discussions, volunteering for on-the-ground community initiatives, networking, and raising awareness about pgEd through formal and informal conversations. Such groups include the National Association for the Advancement of Colored People (NAACP), the Black Ministerial Alliance, and the National Society of Black Engineers (NSBE), just to name a few. Other ways pgEd gets involved includes presenting at private and public events. This can be in the form of formal pgEd lessons, youth workshops, or even a pgEd information table at special events. We take any opportunity to promote dialogue and awareness.
A list of our recent community presentations:
Mattapan Teen Ambassador Summer Program (TASP) Series (7/19, 8/2, 8/9/18)
In summer 2018, pgEd piloted a new workshop series called Teen Ambassador Summer Program (TASP). During the TASP series in Mattapan, Fabienne, Vika, and Flocy held a series of workshops for teens aged 12 to 18. Pictured above is a kinesthetic Cross the Line activity, where students had to move from one area to another if they felt a question that was asked pertained to them. For example, “Cross the line if you were taught genetics in school.”
Cambridge Mayor’s Summer Program TASP Series (8/1-8/3/18)
In a second TASP series, Fabienne, Florcy, and Vika led a series of workshops for a Cambridge summer youth employment program. All the participants were high school students working on the following research questions to be presented at their school in the fall:
- How does the classroom environment and curriculum affect students’ engagement in school and their learning?
- How do students experience and perceive themselves and other students in their relationships with teachers?
- Are your coaches invested in your academic future? How is this displayed/shown?
As a way to provide engaging information that students could use to for their research, we presented several workshops including: race and culture; pgEd’s introductory lesson; sports, sex and gender; athletics and genetics; and the students’ favorite and most talked-about lesson, eugenics.
Boston Green Academy STEM Expo (6/21/18)
Fabienne was invited to be the keynote speaker at Boston Green Academy junior class high school science exhibition. What resonated about this event was that, although being a “green” school, the research projects were not just focused, as expected, on earth-centered environmental topics such as recycling, reusable energy, or conservation. Instead, they reflect the students’ day-to-day real physical and proximal environmental concerns, such as gun violence and drugs. The student projects were captivating, thoughtful, and reflective. Captured in the images above is a back-and-forth interaction where Fabienne asked the audience two very similar questions probing the use of genetics, and received two very different thumbs up/down responses.
Question 1: If you could edit or change one or more of your genes, would you?
Question 2: If you could edit or change one or more of your genes to cure a life threatening disease, would you?
Hoops ‘N’ Health (6/16/18)
The 25th annual sports and health fair was held in Cambridge for a captivating day of of food, basketball tournaments, fun, and information. Fabienne had a table at this event to provide the community with information about pgEd and their part in the conversation concerning personal genetics! Questions about ancestry, gene editing and sickle cell were a few hot topics that kept conversations flowing. One of the most memorable discussions was from a pair of 12 year fraternal twin sisters one whom said she would participate in gene editing to be taller (the shorter twin) and the other said she wouldn’t (the taller twin). This back and forth continued and the opportunity was seized, thus turning it into a mini-4 corner pgEd activity.
Sci Ed Innovators (6/11/18)
Fabienne served as the keynote speaker at Boston’s first Sci Ed STEM Expo for students in grades 3-8. Teachers, parents, volunteers, and Sci Ed founders were all there supporting these burgeoning young scientists as they model the scientific design and inquiry process. Students showcased their projects during the first half of the day. Later, Fabienne led them through an interactive presentation about topics that caused her to fall in love with science, the basics of genetics, and what we do at pgEd. Students were also introduced to the idea of gene editing and had the chance to give their opinions on how genetic information should be used.
CRISPRcon (6/4/18 – 6/5/18)
pgEd developed the program of this year’s CRISPRcon conference in partnership with Keystone Policy Center and the CRISPRcon Steering Committee. Florcy was also a speaker on the panel “CRISPR and the ‘Culture Creators’: The role of thought leaders, trendmakers, and trust builders in societal conversations on gene editing.” The goal of the event was to expand the conversation about gene editing across communities, cultures, and countries. This included high school students from Boston Public Schools, pictured above left with Fabienne. Click on the Wired article linked below to read more about this amazing event: https://www.wired.com/story/crispr-fans-fight-for-egalitarian-access-to-gene-editing/ (Photo credit: Caitlin Cunningham Photography)
WRBB 104.9 FM “Sisters Sowing Seeds” Radio Interview (6/3/18)
Fabienne was interviewed by two community radio hosts, Fulani Hayes and Nataka Crayton, for the “Drumbeat” show on WRBB. The focus of the conversation surrounded questions on the pros and cons of ancestry testing, precision medicine, and the need for increased community awareness of the topic of genetic technologies. The interview ended with 3 points for listeners to consider before choosing an ancestry test.
31st Annual Malcolm X Memorial and Awards Breakfast (5/19/18)
Fabienne hosted a pgEd information table at this prestigious community event hosted by the Black Community Information Center. The keynote speaker was the renowned author, professor, activist and speaker, Dr. Cornel West. At the event, various awards presented to notable members in the Black community, various speakers, youth performances, and community vendors. Fabienne introduced pgEd initiatives to fellow members of the community and discussed the need for greater conversation around the topics of access to genetic technology, equity, and mistrust.
Lives In Me (5/3/2018)
The “Lives in Me” event was sponsored by the Afrimerican Culture Initiative, a nonprofit organization that helps members of the African diaspora find out more about the African culture that was stripped from them due to the transatlantic slave trade. Fabienne was one of several panelist at this event. She discussied the general pros/cons and some frequently asked questions about ancestry testing. The highlight of the evening was the keynote speaker Justina (second from the left), who became very emotional as she recounted her personal quest for culture and identity, on which she found some resolution via ancestry testing that uncovered Cameroonian lineage. Read more about the story in this Wall Street Journal article: https://www.wsj.com/articles/for-some-african-americans-genetic-testing-reopens-past-wounds-1531566000
High Risk Youth Network (HYRN) Forum Presentation (4/27/18)
The HYRYN forum is a collective networking group that brings together providers at a monthly general forum meeting, in order to better serve high risk youth. At this presentation, Fabienne and CJ presented the DNA, Crime, and Law Enforcement lesson plan to the group, with a particular focus around Massachusetts statistics and juvenile justice. The space was filled with a plethora of professionals with experience in fields ranging from law enforcement, social work, law, youth advocacy, and more. We were able to leverage the expertise in the room to discuss cases surrounding genetic testing of minors and other difficult scenarios. The feedback was positive and pgEd was invited back to do another workshop in the future.
Boston Latin Academy (BLA) STEM Fair (4/26/18)
Fabienne and CJ hosted a pgEd table at BLA’s first ever STEM fair. There they disseminated information about pgEd, posed questions about the uses of genetics to parents and students, and gave an opportunity for interested students to sign up and learn more about pgEd teen summer programs. Rice Krispies treats were also given to participants as an incentive to learn about CRISPR gene editing technology. Yummy! What a crispy treat!
YouthWOKE and Boston Latin School (BLS) Science Club (3/1/18)
Fabienne, CJ and Florcy presented at a meeting of the BLS science club in combination with members of YouthWOKE. The DNA, Crime, and Law Enforcement lesson plan was presented, which the students enjoyed. The scenario on familial DNA searching, discussed during the activity portion of the lesson, allowed students to really think outside the box, and it was an authentic and collective learning experience that leveraged many different points of view. At the end of this presentation the students were very thankful and eager to learn more.
10 Youth Of Color Initiative (2/8/18)
CJ, Fabienne and Florcy attended a healing session with the elders and facilitators of the 10 Youth of Color initiative. This initiative takes pride in providing the youth in BPS with information about their culture and giving them life skills and knowledge that they are not getting in schools. Shortly after the healing session, we presented a mini-version of the introductory lesson plan. The audience really knew a lot about the advances in genetics and genetic technologies, and they highlighted a lot of community concerns. pgEd shone light on the benefits of the technology, and posed questions on how technological advances and community concerns can be tackled so that health disparities will not be increased. The group was awesome and provided much insight from several different perspectives.
Presentation at Bay Cove Human Services (12/13/17)
Fabienne and CJ were invited to Bay Cove to do a presentation. Bay Cove is a human service organization that cares for individuals with mental illness, substance use disorder, and developmental disabilities, allowing them to receive the proper resources they need. At Bay Cove, we presented a new mini lesson that is very similar to the introductory lesson plan. The members of Bay Cove were very interested in the technology. We remember one gentlemen who mentioned that such a mini-lesson should have been created years ago. The members were also interested in learning the techniques behind DNA sequencing. They were also interested in reaping the benefits of this technology. The Bay Cove participants loved the presentation and expressed interest in us returning. To learn more about Bay Cove, click on this link: https://www.baycove.org/bcexternal/index.cfm
Presentation at South End Library (12/2/17)
CJ hosted a community workshop at the South End Branch Library. The pgEd introductory lesson was presented, which provided an overview of all pgEd lesson plans. The audience was quiet and focused until the Four Corners activity, where participants have to agree or disagree with various statements presented. It was then that the audience began asking many questions to gain a deeper understanding of the statements and their underlying intent. Towards the end of the presentation, the discussions progressed naturally towards the topics of prenatal screening (NIPT) and gene therapy.
Black Lives Matter Radio Interview (11/16/17)
Fabienne and CJ were interviewed by host Martin Henson for Insight Radio’s Black Lives Matter radio. We discussed the who, what, how and why behind our organization, and more specifically, our opinions about genetics and how it is/has affected communities, particularly communities of color. We also had conversations about the impact genetics has on society today. The interview questions were poignant, truthful, and culturally relevant. We were able to inform Martin and his listeners, and help people better understand the benefits and concerns of genetic testing and genetic technologies.
Presentations at Youth Enrichment Services (YES) (10/25/, 11/1 & 11/8/17)
YES is a volunteer-based organization that takes students from the community and gets them involved in outdoor sports such as snowboarding, skiing, mountain biking, and other other enrichment activities. pgEd went to YES to present 3 different workshops: Introduction to Genetics, Eugenics, and Genetics and Athletics. After the intro lesson, students had a chance to vote on which workshops we would present during our subsequent visits. During our visits, not only did the students participate, but even some of the YES staff members joined in from time to time. A memorable moment was when a student asked why this content wasn’t included in the Boston Public Schools science curriculum, and if books would be updated to reflect the emergence of new genetic technology. The YES program is very special and unique. As with all its youth programs, pgEd hopes to continue this fruitful relationship with this wonderful group.
Boston Day and Evening Academy (BDEA) Presentation Series
Lauren, Florcy, Fabienne and CJ went to Boston Day and Evening Academy to present the introductory pgEd lesson to the students. The students became more intrigued as the presentation went on, and by the end of the presentation, students left wanting to learn more. The Four Corners activity was very well received. Students were fully engaged and ready to take the information they learned and share it with family and friends. This was the first of several pgEd lesson presentations at BDEA. Since then, we have taught 4 additional pgEd lessons. Some teachers even combined classes so that all students could receive the information together. BDEA students are wonderful and we look forward to future presentations.
Coffee and a Bagel (10/18/17)
Fabienne and CJ were presenters for Coffee and A Bagel at the Fields Corner Business Lab. The business lab is a collective community work space with different companies and organizations. This event was an opportunity for members of the workspace to present information about their organization or business. Fabienne and CJ introduced pgEd, its engagement goals, and highlighted specific topics. During the discussion we posed a few questions to the members, facilitated group conversations, and held a Q&A. We wrapped up by offering our availability to collaborate with their individual organizations and desire to spark meaningful dialogue towards awareness of genetics in our community. Nothing like a coffee, bagel, and a bit of knowledge early in the morning!