Table 2 Initial considerations for a process of informed proxy consent in human ancient DNA (aDNA) research, aligned to Fig. 1 steps 1 and 2
Project overview |
What are the scope and intentions of this research? |
Why is this research important? |
What research questions will be investigated? |
What value would aDNA add to our understanding? How will aDNA expand on what is already known? |
Where will the research be carried out? |
Who is funding, or potentially funding, the research? |
Who will work on the research? Disclosure of personnel. Define each person’s role. |
What analytical techniques will be used? |
What is the expected impact on the human remains? How much and what tissues will be used? |
What type of data will be generated? |
How, where, and by whom will results and data be stored and disseminated? |
What are potentially sensitive topics and aspects of the study? |
What are the expected results? |
How can the project be revised or changed based on community requests? |
What is the project timeline? |
Are there plans to expand the project? If so, what will additional consent and engagement processes involve? |
Document the process from the beginning and throughout its duration. |
Limitation of study aims & objectives |
Are the study questions and scope clearly defined? |
What are the benefits and significance of this research for descendant(s) and interested and affected persons, groups and/or parties from the relevant communities? |
What are the risks of this research for descendant(s) and interested and affected persons, groups and/or parties in the community? |
How do the researcher(s) and institutions tangibly benefit from this research? What’s in it for them? |
How do the descendant(s) and other interested and affected persons, groups and/or parties benefit from this research? What would they like from the research and why would they like the research done? |
What has been implemented to ensure protection that researcher(s) cannot use these samples for other research questions and studies not approved through this informed consent? |
Communication structure |
Identify a representative or group of representatives from the descendant(s) and/or interested parties who can act as a broader liaison(s). |
Identify accessible communication tools (Email, WhatsApp, Teams, Skype, Zoom) etc… |
Are there language barriers between the research team and descendant(s) and community interested and affected persons, groups and/or parties? |
Has a nominee been nominated and agreed with consensus to carry voice of descendant(s)/community interested and affected persons, groups and/or parties? |
How will decisions be made? When can the appointed contact person make decisions and when will broader consultation be required? |
Is there a plan for capacity building or training? |
Provide time for thoughtful consideration and engagement of ideas. |
Develop a plan for engagement throughout and beyond the study to maintain relevant communication channels. |
Awareness that back-and-forth communication can be slow, factoring in reasonable time. |
Identify a plan for obtaining and executing research consent. |