Skip to main content

Currently Skimming:

7 Participatory Public Engagement Around Reproductive Science Advances
Pages 99-110

The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.


From page 99...
... • When engaging with patient communities, key points to consider include providing clear explanations in under standable language, encouraging transparency and sharing regular updates on developments, identifying shared goals and objectives, including specific research questions, involv ing ­patients and patient advocates in the process from clinical study ­design to dissemination of results, actively includ ing underrepresented and marginalized communities, and investing in the training, resources, and evaluation to support effective engagement. (Gray Valbrun)
From page 100...
... This final panel was moderated by Melissa Simon of Northwestern University, who said, "if we do not center our patients, our community voices, and really have that situational awareness," then these scientific advances will be "futile, because at the end of the day we want to advance health for everyone and have opportunities for everyone." OPENING PERSPECTIVES Community Engagement and Developing ART As a reproductive endocrinologist who performs community-engaged research, Erica Marsh of the University of Michigan offered her perspective on leveraging community engagement1 to shape research agendas and ongoing ART development. Marsh shared questions that she uses to guide how she thinks about research, clinical work, and the challenges and opportunities in health systems.
From page 101...
... Marsh said that "positionality challenges us to own who we are, what we do, and why we do it." Acknowledging positionality encourages situational awareness, pushing researchers to ask whether everyone has been included in conversations about nascent technologies. Furthermore, community engagement helps scientists and clinicians become more aware of how their privilege -- especially regarding health literacy -- impacts their work and approach to science, she continued.
From page 102...
... To move toward a more equitable future for the next class of ART, Marsh said that scientists and clinicians need to be intentional as they discuss for whom IVG is intended and what the role of the public and commu nity should be in its development. Views, Expectations, and Concerns on IVG: The Perspectives of Potential Users Hannah Landecker of the University of California, Los Angeles, discussed her ongoing NIH-funded project examining perspectives on IVG elicited from potential users, including those who are LGBTQ+ or experiencing infertility.
From page 103...
... Materials designed by Anne Le Goff with images by Amisha Gadani.
From page 104...
... Materials designed by Anne Le Goff with images by Amisha Gadani.
From page 105...
... Landecker noted that workshop ­speakers referenced a preference for having genetically related children as a potential underlying reason for interest in IVG but that voices from her study seem to focus more on its utility for family formation to create a sense of "kinship." "At this stage in the process," Landecker concluded, "we really need to be going through a co-learning and co-listening process" in which life and social scientists consider how best to solicit community and public engagement with IVG. A Patient Advocate Perspective on Developing Novel ART Tanika Gray Valbrun, cofounder and CEO of the White Dress ­Project -- a patient advocacy group for women living with uterine fibroids -- provided her perspective on how scientists and clinicians can engage patient com 4 Ethnography is an observational research method that provides an account of a particu lar society or community, such as scientists researching IVG.
From page 106...
... During her talk, she shared her personal struggles with fertility due to uterine fibroids and how these experiences inspired her to establish The White Dress Project. In addition to raising awareness and providing a supportive community for those affected by this condition, her nonprofit has formed a coalition of patient advocates "who understand that they do not have to suffer alone in silence with these reproductive health issues," she said.
From page 107...
... I'm standing in my power as a patient advocate, and I know that my voice is important to this conversation." PANEL DISCUSSION The Complexity of Community Engagement Suter asked panelists to reflect on how community voices can shape policy, especially in the United States, where, she noted, public engagement is not always taken seriously. Gray Valbrun identified making these issues personal as a potential solution for combating disinterest in ­women's health issues in today's embattled political climate.
From page 108...
... Transformational Change Ogbogu commented on how, for those in positions of power, a lack of humility can lead them to "step into these spaces" with "the confidence of people who know, when we don't know. And with that confidence -- we make assumptions, declarations, and even policies." He acknowledged that activities discussing reproductive advances have begun including engagement panels, but an unwillingness to "cede space" remains.
From page 109...
... When engaging with communities, Marsh urged scientists and clinicians to resist hubris and dismissive attitudes, which patients and stakeholders often describe observing in research and medical professionals. Scientists and clinicians must acknowledge and address their blind spots by "creating diverse spaces with diverse voices," she said, "at the end of the day, we want to make sure we are not an echo chamber, that we are not convincing ourselves about the power and the wonder of the science and missing out on the impact on humanity of the work.
From page 110...
... Patient input can be married with clinical and scientific expertise to ensure the best decisions are made moving forward, Gray Valbrun concluded.


This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More information on Chapter Skim is available.