Donating Cells for Research
To understand human disease, researchers must study human cells. While studying cells in the human body presents practical and ethical limitations, donated cells can be studied more easily in a controlled laboratory environment.
The way diseases and their treatments affect individuals varies, in part due to diversity in sex, race, and/or other genetic factors. For this reason, it is important to study cells donated by people from many different backgrounds to help identify why certain diseases and their treatments impact people and populations differently. Here, we provide information and address considerations regarding donating cells for induced pluripotent stem cell and embryonic stem cell research.
Donating Cells for Induced Pluripotent Stem Cell Research
Donated cells, such as those found in blood samples or skin biopsies, can be engineered by scientists in the lab to become a type of stem cell, termed “induced pluripotent stem cells”. Similar to embryonic stem cells, induced pluripotent stem cells can then become any cell type in the human body. These stem cells can be converted in the lab to many different cell types, such as neurons found in your brain or spinal cord, liver cells, or kidney cells. Studying how stem cells work and the different cell types they can become helps scientists learn more about cell and tissue development. Making induced pluripotent stem cells from donors who are healthy, suffering from disease, and who have known genetic mutations, is important to improve our understanding of disease and are critical tools that are helping scientists develop and test new drugs and therapies.
Induced pluripotent stem cells are used in numerous ways to help unlock the mysteries of human biology and advance medicine and biotechnology:
Identifying new drugs to treat diseases. Two obstacles to discovering new disease-treating drugs include: (1) limited numbers of appropriate cell types for testing thousands of different potential treatments, and (2) making sure candidate drugs are not toxic to healthy human cells. To help address both of these concerns, scientists are using induced pluripotent cells in the lab to create a virtually unlimited supply of cells upon which drugs can be tested simultaneously, as well as cells that can be used to test whether or not new candidate drugs will be toxic to other cell types.
Personalizing medicine. Since every person is unique, their induced pluripotent stem cells have unique genetic variations and mutations as well. This means that multiple drugs and treatment combinations can be tested in a lab on each patient’s unique cells to determine the optimized treatment.
Discovering how organs form and function. By studying how induced pluripotent stem cells become mature cells, like liver or lung cells, researchers can better understand how cells form normally during embryo and fetal development, and what can go wrong. Further, when induced pluripotent stem cells are grown and developed into organoids, they can be used to model human organs to study how they form and function.
Making new replacement cells for damaged tissues and organs. Induced pluripotent stem cells can be used to make many different cell types in the lab. These newly produced healthy cells potentially could be transplanted into patients to replace cells lost to injury or disease. For example, it could be possible one day to replace insulin-producing cells of the pancreas in patients with diabetes, or dopamine-producing neurons in patients with Parkinson’s disease, with healthy ones made from induced pluripotent stem cells.
Currently, clinical applications of induced pluripotent stem cell technologies are experimental, meaning there is no treatment using induced pluripotent stem cells that has completed all necessary clinical trials or gained regulatory approval. Research continues to evolve and, one day, may yield effective new methods and therapies to treat patients.
What questions are important to ask before donating my cells for induced pluripotent stem cell research?
All cell or tissue donations should begin with a complete understanding of “informed consent.” It is important to read through the informed consent form carefully and ask your doctor or medical professional to clarify any questions before signing. This means that donors receive information on the process, procedure, and uses of the donated cells or tissue. Donors also should be given the opportunity to ask questions, so that they can make informed decisions about the use of their cells. These forms can vary substantially from country to country, and even between hospitals, universities, and health care facilities, but they all share important issues you should clarify before you donate cells, including:
Who will have access to the cells I donate or the resulting induced pluripotent stem cells?
How will the cells I donate or the resulting induced pluripotent stem cells be used?
How will the privacy of my personal information be handled?
If my cells are sequenced to determine my genetic code, who will have access to my genetic information? Will this information be shared publicly?
Will information about my cells’ genetic information or responses to drugs be disclosed to me, as they are revealed through research?
Will I have access to a genetic counselor or ethics expert I can talk to?
Will I have the option to change my mind at any time?
What is the procedure for donating cells, and how will they be turned into induced pluripotent stem cells?
Samples of cells are collected in several ways, most commonly through a blood sample or skin biopsy. These cells are then processed in a lab and reprogrammed into induced pluripotent stem cells. This commonly is done by adding or “turning on” certain genes, or by growing them in specific conditions in a lab.
Both the donated cells and the transformed induced pluripotent stem cells may be stored indefinitely for future use, as described in your informed consent form.
Donating Cells for Embryonic Stem Cell Research
Most human embryonic stem cells are derived from donated three-to-five day-old fertilized embryos. The inner mass of cells of the embryo is removed and grown under special conditions in a laboratory that allows the cells to be grown indefinitely.
For individuals undergoing in vitro fertilization (IVF), the process often involves the production of more embryos than can be implanted. These additional embryos either can be stored for future fertility treatments, donated for embryo adoption, discarded, or donated for scientific research, including embryonic stem cell research. To learn more about these options, talk with your doctor or medical professional.
If induced pluripotent stem cells and embryonic stem cells are similar, why is there still a need for embryonic stem cell research?
The continued use of embryonic stem cells in research labs around the world is vital to understanding early development, disease, and discovering new therapies. Additionally, there are some specific distinctions between embryonic stem cells and induced pluripotent stem cells including the following:
Embryonic stem cells are not identical to induced pluripotent stem cells. While induced pluripotent stem cells share many of the same properties and characteristics as embryonic stem cells, researchers continue to study the similarities and differences between them in order to advance scientific discovery.
Induced pluripotent stem cells have been reprogrammed (they began as adult cells). Unlike embryonic stem cells, which have never developed into specialized cell types (like blood or skin) and consequently have maintained their “blank slate,” induced pluripotent stem cells have undergone biological aging. Induced pluripotent stem cells may therefore retain genetic memory of their age and tissue of origin as well as any mutations accumulated over time.
Embryonic stem cells are the “gold standard” for pluripotent stem cell research. Embryonic stem cells were initially isolated from embryos and therefore remain essential to compare and contrast with induced pluripotent stem cells, setting the bar for determining what a completely reprogrammed cell looks like for future research and clinical purposes.
If some embryonic stem cells already exist, why is there a need for more?
It is valuable to study embryonic stem cells with different genetic backgrounds in order to investigate variations in disease and to test how genetic differences impact the effectiveness of potential treatments.
Most importantly, many new discoveries come from unexpected places. By studying cells that come from genetically different embryos, scientists may uncover unanticipated breakthroughs. embryonic stem cells that come from embryos of diverse genetic backgrounds often reveal important insights into the roles that different gene combinations play in development and disease.
Figure 1: You will be asked for a sample.
Figure 2: The cells in your sample will be turned into induced pluripotent stem cells in the lab. These stem cells can turn into any type of cell in the body. Your stem cells and any cells that they turn into will have your DNA.
Figure 3: Stem cells can keep growing in a dish so that researchers can keep using them for a long time. Your stem cells may be preserved for as long as researchers need to use them or as described in the informed consent document.
Figure 4: Your stem cells may be used in many different ways, such as modeling human diseases in laboratory animals or in a dish, as well as developing new drugs or treatments.
Figure 5: The usefulness of stem cells can be improved if scientists sequence their whole genome, or all of the DNA inside the cells. Whole genome sequencing allows scientists to read your entire genetic code to compare it with other people’s genomes.
Figure 6: Your stem cells may be kept in storage for future use and research. Your name and personal information may be kept separately from the stem cells in a password-protected database that only authorized people will be able to access.
Figure 7: Your stem cells may be shared with researchers at other academic institutions or private companies. Depending on the signed informed consent agreement, you may be able to ask for your stem cells in the original storage site and/or other sites to be destroyed.
Figure 8: By sharing your stem cells with other researchers, more data might be collected that could reveal new information about your health or new insights into diseases.
Figure 9: With your permission, researchers may recontact you for additional samples or for updates on your health.
[Panels created by Dylan Hyun, graphics by Matthew Yoder]
To understand human disease, researchers must study human cells. While studying cells in the human body presents practical and ethical limitations, donated cells can be studied more easily in a controlled laboratory environment.
The way diseases and their treatments affect individuals varies, in part due to diversity in sex, race, and/or other genetic factors. For this reason, it is important to study cells donated by people from many different backgrounds to help identify why certain diseases and their treatments impact people and populations differently.
In this document , we provide information and address considerations regarding three types of donation for research purposes:
Donating Cells for Induced Pluripotent Stem (iPS) Cell Research
Donating Cells for Embryonic Stem (ES) Cell Research
Donating Tissue Samples and Biopsies
