Our Mission
The SMaHT project would not be possible without the generous donor families who have provided such precious tissue donations 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 been representative, 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 of different voices and perspectives we engage at all stages of the science.
Click the image above to watch an ELSI team member explain why the SMaHT project is so important.
ELSI 360⁰ Model (Ethical, Legal, and Social Implications from all perspectives)
The SMaHT study will employ an innovative framework called ELSI 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. 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 organized and the key stakeholder groups that will be engaged.
