Stem cell agency educating patients on how they can make a difference

New brochure that describes our stem cell bank initiative [download pdf]

Geoff Lomax is CIRM's Senior Officer for Medical & Ethical Standards

One thing patients and their families can do to advance the role of stem cells in curing disease is to donate a small skin or blood sample if asked. How can this help? Here is an anecdote from recently published research.

Perhaps you heard the recent news about a breakthrough that provides new hope for treating ALS, also known as Lou Gehrig's disease. Researchers at Harvard University used patients’ skin cells to create stem cells that can form any cell in the body. The researchers then transformed the stem cells into motor neurons. ALS is a disease where motor neuron death leads to the death of the patient. The research team observed that ALS patients’ motor neurons behaved differently that those of people without the disease. Specifically, the neurons were over stimulated and “firing” too rapidly. Based on this observation, the team conducted a clinical trial in a “dish.” They tested an anti-epilepsy medication on the ALS patient neurons to reduce their rate of firing, and in fact, the treatment slowed the cells down (read the Harvard Gazette report on the research). Experiments such as these (1) help explain the disease process and (2) allow testing of treatments in the laboratory.

CIRM believes success stories such as these will become more and more common as scientists use stem cells to study different diseases. In 2013, CIRM announced the creation of a stem cell bank designed to store and distribute cells representing different diseases including autism, blindness, cardiovascular disease, Alzheimer’s and liver disease. The bank is specifically intended to make stem cells available to researchers so they can better explain these diseases and test new treatments just like the Harvard team did.

One critical aspect of the project involves obtaining skin or blood samples from thousands of patient donors so they can be transformed into stem cells. The process of obtaining permissions from patients is called “informed consent.” Informed consent always includes information about the purpose of the research and disclosure of any risks to the participant. In the context of the CIRM stem cell bank, donors receive detailed information about how the cells might be used and distributed. Spelling all this out is rather lengthy with some consent forms running as long as 22 pages.

While providing comprehensive consent to donors in writing is necessary, we also believe it is helpful to give them easy to understand information about the essential and unique aspects of the research. To address this need, CIRM worked with experts in health communication to develop a brochure describing the Induced Pluripotent Stem Cell Initiative.

CIRM has distributed the brochure to researchers who are collecting cells from donors. The researchers have been pleased to receive this supplemental information to support the consent process. Again, the major purpose of the brochure is to highlight the unique and essential aspect of the stem cell bank. Thus, it emphasizes:

• What are stem cells and why are they unique
• How the donation process works
• How donated cells will be used and
• Where and to whom the stem cells will be distributed

These points are explained in plain English with many illustrations. We hope this level of information serves to reinforce the overall informed consent process. We hope patients come away from this experience feeling they have made a substantial contribution to science and medicine.

Geoff Lomax