Our Mission
The SMaHT project would not be possible without the generous donor families who have provided such precious gifts to support this important work. We are grateful to them and their loved one’s legacy.
The SMaHT ELSI study will gather information from family decision-makers and staff who meet with families to ask about donations. Historically, genomic research has not represented diverse donors, which has limited the impact of genomic research. The ELSI team will also try to learn more about how to support all families who have lost a loved one and must decide whether or not to donate their loved one’s tissues for research.
Understanding the ethical, legal, and social implications of genomic research is a public service commitment and need; however, these efforts will only be as good as the number and diversity of voices and perspectives we engage at all stages of the science.
Discover why donor diversity is crucial to the SMaHT Project’s mission of understanding somatic mosaicism. Click the image above to watch an ELSI team member explain how diverse, representative tissue samples help ensure research findings benefit all populations equitably.
DEI 360⁰ Model (Diversity, Equity, and Inclusion from All Perspectives)
The SMaHT study will employ an innovative framework called DEI 360°. This model reflects the goal to seek and include all necessary stakeholders at all stages of the research study with a focus on engaging with community stakeholders as well as scientific and organ procurement teams. Within this model, the definition of “diversity” is broadened from traditional metrics (e.g race and ethnicity) to also include diversity in perspectives related to age, gender, geographic location, language and lived experiences. With this model, the SMaHT study will pioneer how stakeholder feedback can be integrated into study processes and operations in real time to ensure that donor experiences are prioritized while also assuring scientific study goals are met. The figure below depicts how the model within SMaHT is operationalized and the key stakeholder groups that will be engaged.
