|Physician collecting donated skin biopsy from patient for generating iPS cells|
The scientific sessions of the International Society for Stem Cell Research always start with a seminar organized by its Ethics and Public Policy Committee. This morning’s session focused on how the research community should collect and handle human tissue donated for research.
This is particularly relevant for CIRM as we are in the midst of launching an effort to create a stem cell bank by collecting skin cells or blood cells from 3,000 people and reprogramming them into stem cells using the technique known as iPS. That bank will provide valuable research tools to scientists around the world trying to understand and develop therapies for 11 different diseases. We wrote about that effort here.
The ISSCR session started off with an old friend William (Willy) Lensch from Harvard and Children’s Hospital, Boston. He is one of the relatively rare researchers who also goes into the clinical setting and discusses research participation directly with patients. He noted,
When I am in the room with them my foremost task is explaining the research, what it is we hope the research will achieve. The most important part of this is listening.
Willy went on to address some other important but difficult aspect of this often overlooked aspect of research. He said it is particularly hard to tell a patient that really wants to participate in research that they are not right for the study. Another of the “difficult circumstances” he outlined was the “clinically desperate patient or parent”.
Truly informed consent requires making sure the donor knows what the research hopes to do, but also what it cannot do.
It is really hard reminding a desperate parent that this work is very unlikely to benefit their child
But it is necessary, and I was glad to see Willy and his fellow panelists had a room full of young and senior investigators who agreed enough to spend a few hours discussing it. CIRM has devoted considerable time and resources to analyzing these issues, and we wrote about part of that effort here.
Willy closed by reminding the audience to “always appreciate that this research material comes from real people and is precious.”