IDECIDE STUDY

illustration of multicolored arms and hands formed in a heart shape

The ELSI (“Ethical, Legal, and Social Implications” of donating for genetic research) team leads a substudy of the SMaHT project called, “Inclusion of Diverse Perspectives to Inform Ethical and Social Considerations in Donation of Tissue for Genomic Research in End-of-Life Discussions (I-DECIDE).”

We want to know…

  • How do families decide whether to donate?
  • How do tissue requesters do their work?
  • What supports/resources would help families and tissue requesters?
  • How could we better respect families, including their culture, values, beliefs, and grief?
  • What barriers have caused genetic research to have limited diversity in the past and how can we prevent those barriers now?

I-DECIDE: Inclusion of Diverse Perspectives to Inform Ethical and Social Considerations in Donation of Tissue for Genomic Research in End-of-Life Discussions

Understanding Tissue Requesters’ Experiences, Opinions, and Expectations about Discussing Tissue Donation for Research with Families

This study is trying to learn about tissue requesters’ experiences and opinions related to approaching families about post-mortem tissue donation for research after their loved one has passed. We want to learn directly from people who do this work. We think this is important so we can better support tissue requesters and families in future efforts related to end-of-life donation and genomic research.

Tissue requesters can participate if they work for an Organ Procurement Organization that is involved in the SMaHT project. As a reminder, SMaHT is the study that uses adults’ donated tissues to do genetic research. Tissue requesters can do our study whether or not they have actually approached a family about donating to SMaHT. We hope findings from this study will help us make things better for future tissue requesters and families who are deciding whether to donate their deceased family member’s tissue for genetic research.

Understanding Family Decision Makers’ Experiences, Opinions, and Expectations about Tissue Donation for Research

This study is trying to learn what people think about donating their adult family member’s tissue for genetic research studies. We want to learn directly from people about what might make them want to donate or not donate their family member’s tissues. We think this is important because we want to make things better for future families if they are ever asked if they wish to donate their loved one’s tissues.

People can participate if they were previously asked to donate their family member’s tissues for the SMaHT study. As a reminder, SMaHT is the study that uses adults’ donated tissues to do genetic research. People can do our study whether they said yes or no to donating their family member’s tissues.

We hope findings from this study will help us make things better for future families who decide whether to donate their family member’s tissue for genetic research.