Who should have a say on editing DNA?

ASU Consortium for Science, Policy and Outcomes joins global efforts to bring public values for anticipatory governance of gene editing technologies

September 22, 2020

Designer babies, mutant mosquitoes and frankenfoods: These are the images that often spring to mind when people think of genome editing.

The practice, which alters an organism’s DNA in ways that could be inherited by subsequent generations, has implications so profound that a growing group of experts believe it is too important a matter to be left only to scientists, doctors and politicians. Illustration by Alice Mollon Download Full Image

In the journal Science, 25 leading researchers from across the globe, including Consortium for Science, Policy, and Outcomes Associate Director Mahmud Farooque at Arizona State University, are calling for the creation of national and global “citizens’ assemblies,” made up of laypeople, tasked with considering the societal implications of this emerging science. The potentials for genome editing are immense. On the one hand, it could prevent or cure genetic conditions such as sickle cell anemia, cystic fibrosis and even some forms of cancer. On the other, it could create new, treatment-resistant illnesses or cause inequalities with designer babies engineered for superstrength or intelligence.

Researchers — including Professor John Dryzek, head of Australia’s Centre for Deliberative Democracy and Global Governance at the University of Canberra — believe these implications are so important that they should be examined not just by those in the field, but by the general public.

“The promise, perils and pitfalls of this emerging technology are so profound that the implications of how and why it is practised should not be left to experts,” Dryzek said.

The sentiments connect well with decades-long CSPO scholarship and practice with respect to the governance of emerging technologies. Amidst the vacuum left by the demise of the U.S. Congressional Office of Technology Assessment in 2010, CSPO joined the Museum of Science, SciStarter, the Loka Institute and the Science, Technology and Innovation Program at the Woodrow Wilson International Center for Scholars to launch the Expert and Citizen Assessment of Science and Technology (ECAST) network to bring citizen voices into science and technology decision-making.

After a demonstration project providing citizen input to the United Nations Convention on Biological Diversity in collaboration with the Danish Board of Technology, ECAST piloted its first participatory technology assessment (pTA) project with NASA on its Asteroid Initiative. ECAST’s portfolio now includes projects on nuclear waste siting, community resilience, climate intervention research, automated vehicle futures and gene editing.

To assist global citizen deliberations on gene editing, CSPO is working on a series of three closely connected projects. In partnership with the Kettering Foundation, CSPO is developing an issue guide by conducting focus group deliberations at the local community level. These open-framed focus groups will allow participants to share their hopes and concerns and direct the conversation on their terms. The resulting issue guide will be used for community-based, deliberative conversations about human genome editing.

The issue guide will also help inform the design of a series of large-scale, national public deliberations on human genome editing, which CSPO will co-design with the Museum of Science. These deliberations are funded through a three-year grant from the National Institutes of Health awarded to Christopher T. Scott, the Dalton Tomlin Chair of Medical Ethics and Health Policy at the Center for Medical Ethics and Health Policy at Baylor College of Medicine, and Cynthia Selin, associate professor in the School for the Future of Innovation in Society and the School of Sustainability at Arizona State University. The aim is to develop forward-looking, democratically derived, and ethically reflective processes useful in preparing for possible futures related to human genome editing.

The U.S. deliberations will inform and lead into a Global Citizens Assembly on Genome Editing scheduled for early 2022. This assembly will bring together a minimum of 100 participants from different countries for multiday deliberations on the global governance of genome editing.

It will be the beginning of a “more inclusive, effective and integrated global citizen deliberation that will inform the broader public as much as experts and decision-makers,” said Farooque, leader of the U.S. public engagement efforts and clinical associate professor at the School for the Future of Innovation in Society within Arizona State University’s College of Global Futures.

“These forums will provide a unique opportunity for us to build an anticipatory and participatory multilayered governance framework for gene editing in particular and other socially disruptive innovations in general, early in the process when the ‘should we’ and ‘we should not' options are still on the table,” he added.

Written by Kimberly Quach, program coordinator, Consortium for Science, Policy, and Outcomes Arizona State University.

Scholarship opportunity changes the game for first-gen students

September 22, 2020

This semester, first-generation college student Angel Ledesma began his college journey at Arizona State University with a goal of becoming an orthodontist one day. But it wasn’t a given that the first-year biological sciences major would be able to attend college.

The Sierra Linda High School graduate from Phoenix said he started high school on the wrong foot, struggling with his GPA and the crowd he was running with. But he turned things around in a big way. Just a slice of his student involvement during high school includes being in the mariachi band, serving as the drum major in marching band, joining Mecha and also participating in ASU’s TRIO Talent Search, a federal precollege program that provides support services for first-generation or low-income students seeking higher education, specifically serving the Tolleson Union High School District. From left: One At a Time Scholar Berenice Figueroa and her mentor, Lois Rogers. From left: One at a Time scholar Berenice Figueroa and her mentor, Lois Rogers. Download Full Image

Ledesma is the first Talent Search participant to earn a One at a Time scholarship, part of a recruitment pipeline that is developing between ASU TRIO programs and the scholarship. He is one of 30 current One at a Time scholars, all first-generation students from Arizona who are attending ASU, the University of Arizona, Northern Arizona University or Maricopa County Community Colleges. The program began in 2001, launched by Terry Wilson, who was inspired to create the program because of financial assistance he was given to attend college. 

Ledesma became laser-focused on his college goals with the help of Talent Search, yet he struggled to be able to afford college: His FAFSA application wasn’t yielding enough financial assistance, and his family of six couldn’t afford to contribute enough either. He wasn’t sure what he would do until he heard from the One at a Time scholarship through St. Vincent de Paul. He learned that thanks to this scholarship, he’d not only have enough money to close the gap; he’d have access to mentorship and a supportive community as well. 

After applying for about 100 scholarships, relief washed over Ledesma knowing that he wouldn’t be saddled with huge debt or have to take his focus off school to work too many hours.

“It really makes me feel safe that I can focus on school. ... I really thank them for that,” he said.  

Vanessa Perez, a program coordinator for ASU’s Talent Search program, said Ledesma stood out among her students at Sierra Linda in the way he paid attention, came into her office hours on campus and applied for a dizzying number of scholarships. She said it meant the world to him that he’d be able to start college at a four-year institution.  

“He inspires me because he was so set on going to the university, although he didn’t have the money. He just never stopped applying for scholarships,” said Perez, who recommended that he apply. “I know the students have all the potential in the world to do whatever it is they want."

Each scholar receives their annual award as well as ongoing mentorship and personal and career development through the program. There are currently 20 Sun Devil One at a Time scholars. The scholars at Arizona State University and other institutions receive more than $130,000 in financial aid and support services annually. The scholarship is made possible by the generosity of individual donors, community partners as well as the time and financial investment of Vincentians: the people who live and carry out the mission of St. Vincent de Paul as a Christian calling to help their communities. 

The One at a Time Scholarship is unique in that it follows students all the way to graduation, even if that takes more than four years, accommodating students who may have nontraditional barriers. St. Vincent de Paul development officer Andy Romley said that the wraparound approach of the program “speaks to the heart and soul of St. Vincent de Paul,” which locally provides programs in central and northern Arizona to feed, clothe, house and heal. The programs include charity dining rooms, a transitional shelter, homelessness prevention and more.

Romley said that the scholars may not have a lot of time or be comfortable with the systems of higher education; they tend to have work responsibilities because they’re breadwinners for their families, and some have families with mixed immigration status. That’s why the program focuses on holistic support to address students’ needs. 

“I’m sure it’s similar to all our first-gen students. Just having resources and tools may be an issue,” she said. “We not only look at the academic piece. We look at the whole student as far as: What are their basic needs? Do they need food? Is their rent taken care of? Do they have adequate housing and internet access?” Romley said.

Romley said students may also have challenges with transportation and may be not used to advocating for themselves in formal situations. The scholarship program helps students navigate through barriers, stay connected and stay on track.

“One at a Time transforms lives. We strive to address and care for people whatever their challenge. To be able to make a difference and put someone on the path out of poverty or to reset their trajectory is part of what brings meaning to the work we do,” she said.  

One at a Time Scholars’ lives may be transformed, but they are also themselves often inspired to transform the lives of others.

ASU senior community health major Berenice Figueroa, who is a One at a Time Scholar, spent the summer working through the Ben & Catherine Ivy Foundation Center for Family Wellness as a Leadership in Action fellow, leading health education for clients who have been diagnosed with prediabetes or diabetes. The center is part of St. Vincent de Paul’s Phoenix health clinic, which serves neighbors who are uninsured and low-income. She’s enjoyed the camaraderie and professional support from the fellows and from St. Vincent de Paul staff, saying “the experience has been wonderful.”

“I’m loving everything that I’m doing,” she said. “Even though the internship is virtual, I’m getting an abundance of experience interacting with participants during class. Creating class content has also allowed me to navigate various facilitation styles to ensure that the information presented is understood by all participants.”

The experience was also a way to recalibrate her career plans after nursing school didn’t work out. Figueroa describes it as a shift in her professional plans but not in her overall goal of promoting community health. She’s continuing her fellowship through 2021. 

“(I decided) that was OK, because maybe this path is going to offer a different perspective in the health profession,” she said. “I decided to stick with it and try to find myself in this profession to see what new skills and knowledge community health has to offer in order to fulfill what I truly want to do.”

What drives her isn’t one particular program; it’s a passion to make a difference in the health of her community.

“I aim to ensure every individual receives the care and support they deserve when it comes to their health. I have noticed within the Hispanic community and low-income community how underinformed and misinformed individuals are in health,” Figueroa said. “I believe it is a reason as to why many individuals do not know the correct actions to take to improve their well-being. Every individual deserves the right to attain the necessary resources to make healthy lifestyle implementations and changes to improve their quality way of living.”

Part of what gives Figueroa her resilience and perspective is the mentorship experiences she has had through the One At a Time scholarship. Figueroa said her mentor, Lois Rogers, has been a constant in her college life, giving emotional support and guidance. Figueroa said it’s probably the most valuable outcome of her scholarship experience as a first-gen student and that she’s experienced an outpouring of support from several staff and program mentors, who have shown her that “anything is attainable no matter what comes your way.”

“I’ve been able to really show myself and let them know who I am,” she said. “I want to be someone who is involved in the community.”

Figueroa also found a great mentor and role model in Marcelino Quinonez, ASU director of educational outreach, who is a One at a Time alum and now works to build access to higher education for Arizonans at Access ASU. Quinonez knew firsthand what the program meant for Figueroa, and now he serves as a mentor to current scholars. 

“As a first-generation college student, navigating college was a foreign concept for me, and the (One at a Time) program provided me with invaluable lessons,” he said. “Berenice is the epitome of an OAAT scholar. She is resilient, curious, self-driven and committed to her community. ... She will impact a large number of people, and the (One at a Time) program will always be able to say they committed a grain of sand to her success. Berenice makes us better.”

The program has seen more than 78 graduates since its launch and utilizes mentors within the St. Vincent de Paul community as well as within the ASU community and beyond. This collaboration is just one facet of a broad ASU and St. Vincent de Paul partnership that since the 1980s has included academic initiatives, professional development, community service and more. The partnership was formalized in 2017.

Sharon Smith, ASU associate vice president and dean of students for ASU’s Downtown Phoenix campus, describes the relationship as one that marries the deep service mission of St. Vincent de Paul with ASU’s charter to take fundamental responsibility for the communities we serve. 

“One at a Time allows additional resources from a strong community partnership to directly impact our students, increasing retention and student success,” Smith said. “The relationship and how it empowers students has a tremendous impact on Arizona families and communities.”

The ASU and St. Vincent de Paul partnership has offered more than 141 student internships and resulted in more than 20,000 hours of service from thousands of students. Through the collaboration, students have launched homeless family reunification efforts, participated in research initiatives, completed service hours and more working on topics ranging from urban farming to program evaluation and more.

To learn more about how you can get involved, reach out to program manager Erica Hodges.

Hannah Moulton Belec

Digital marketing manager, Educational Outreach and Student Services