I completed my PhD in Public Health Genetics from the University of Washington's School of Public Health in 2017. My dissertation is entitled "Researcher trustworthiness within community-academic partnerships: Lessons for genomic research." I drew from a virtue and feminist ethics framework to conduct a mixed methods study of trustworthiness within partnerships between communities and university-based researchers, and how institutional factors can influence perceived trustworthiness. My committee includes Drs. Wylie Burke (chair), Deb Bowen, Kelly Edwards, Ken Thummel, and Noah Simon (GSR); Jordan Lewis (former GSR). This work grew from years of studying the ethics of community-academic partnerships, and seeing the challenge of developing trust within these partnerships. A researcher's responsibility is to be a trustworthy research partner, but there are ways in which institutional history, policies, and norms provide barriers to fulfilling community partners' expectations of a researcher's trustworthiness. I seek to understand these issues, identify the barriers and suggest ways that our institutions can change, to remove these barriers and help promote trust.
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Abstract
  ​For many communities, health research exists on a backdrop of distrust of research institutions. Decades of harmful experiences across many types of health research have contributed, including studies of genetics, infectious diseases, therapeutic drug trials, social-behavioral phenomena, and environmental exposures, such as unconsented exposure to radiation in Alaska Native communities. In addition to historical harms, ongoing policies and norms signal disrespect and untrustworthiness to communities that might otherwise be interested in research.

Distrust born out of this harm has led to a lack of participation in health research, which threatens to deny these communities potential benefits from large public research investments, and to increase existing disparities in health and health care. However, research is often recognized as potentially beneficial to communities, and many communities would like to participate on their own terms.

Novel approaches to research with communities have developed in recent decades, founded on the idea that the affected or studied community should be an equal partner in the research. Community-academic partnerships taking approaches such as community-based participatory research (CBPR), have become increasingly prevalent, and funding for large clinical research programs, such as the Patient-Centered Outcomes Research Institute (PCORI) have stipulated that grantees have community co-investigators in their studies.

Throughout the community-academic research partnership literature, building trust is seen as essential to meeting partnership goals, and to upholding CBPR principles. Given the checkered institutional history, academic researchers hold a responsibility to cultivate their own trustworthiness with regard to communities, in order to build trust and start to overcome these barriers. Few partnerships have described how they have built or evaluated trust and even fewer have described researcher trustworthiness in their partnerships.

I employed a mixed-methods approach to address three key aims: 1a) To characterize trustworthiness within community-academic research partnerships, and b) to identify institutional barriers to trustworthiness encountered by such partnerships, and approaches taken to overcome those barriers; 2) To develop a measure of researcher trustworthiness in community-academic research partnerships; and 3) To identify opportunities to cultivate trustworthiness within a case of genetic research, APOL1 testing for End-Stage Renal Disease risk in African American communities.  

My Conceptual Model Linking Trustworthiness to Health Benefit

I draw from Nancy Nyquist Potter's virtue and feminist ethics framework on trustworthiness, that argues for individuals within institutions to be responsive to the needs of those in positions of relative disadvantage, including shifting the structures within our institutions that prevent our doing so. My rationale is that to the extent that research can improve health in communities that have been either harmed by or left out of research, increasing the trustworthiness of our academic institutions will lead to an increase in community participation in research partnerships that matter to them. Greater community participation as both partners and participants, will lead to greater relevance and accuracy of data, then enhancing applicability of the research in both community and healthcare/policy settings. Actions deriving from these better study data can lead to improved health outcomes. 

Community-Campus Partnerships for Health Conference, May 2016

I presented some preliminary findings from the qualitative aim of my dissertation study in New Orleans on May 13, 2016. I hosted an interactive roundtable discussion focused on researcher trustworthiness. My handout is available below: 
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Photo credit: Melissa Holmquist-DeNomie

Abstract:  A legacy of academic institutions causing harm to underrepresented communities has led to distrust of these institutions. Ethical community-academic partnerships can be a remedy and means to work toward health equity. Still, institutional structures often conflict with community needs, hindering participation. I draw from Potter’s feminist virtue ethics framework for trustworthiness in non research settings (2002) to engage members of partnerships in considering what it means to be a trustworthy researcher and institution. I argue that the role of white researchers is at least two-fold: to support the development of minority individuals be coming health leaders, and to dismantle systems of oppression within our institutions and their effects on our partnerships. I offer research-based examples of Potter’s ten key features of trustworthiness for consideration of specific steps we can take toward the goal of inclusive, trustworthy institutions.
​I gave an oral presentation, as part of the "Diversity and Dynamics in CBPR Partnerships and Coalitions" session. 
Photo credit: Suzanne Grieb

​“Our hands are tied:” Institutional barriers and creative remedies to foster researcher trustworthiness in community-based research partnerships.

Abstract: A history of research missteps has led to distrust of research institutions among many communities who experience health disparities. Building trust is widely acknowledged as central to developing the community-based research partnerships that may reduce health disparities. Building trust requires academic researchers to commit to being trustworthy with regard to their partners and participants. However, academic institutional structures and norms constrain researchers’ choices, and institutional reputations often accompany individuals when initiating community-based partnerships. Furthermore, researcher trustworthiness has not been characterized previously in the literature, and it is not always clear how to demonstrate trustworthiness in this setting. I present results from qualitative interviews with community- and academic-based members of health research partnerships. When faced with institutional structures conflicting with community interests and preferences, researchers have three basic options: they may choose to refuse to comply, to try to convince their community partners that the institutional requirements are worth following, or to negotiate with the institution to devise a creative solution to the conflict. I identify institutional barriers to trustworthiness and offer examples of each of these choices and how they facilitate researchers’ trustworthiness. Taking trustworthiness seriously as a researcher requires understanding and prioritizing community perspectives, and can strengthen community-based research partnerships working to improve community health and reduce health disparities.