Want to help with medical breakthroughs? Donate some extra cells to a biobank

Right now, it’s possible that cells from my body are growing in a lab somewhere and are being used to test new cancer drugs.

After I was diagnosed with neuroendocrine tumors, a rare type of cancer, I went through surgery to remove the tumors and chose to donate them to a biobank. I gave consent for the cells from my tumors to be used to create cell lines and organoids (three-dimensional tissue cultures) as models to study neuroendocrine tumors, since it is a poorly understood, under-investigated disease with limited treatment options.

Most likely, I will never benefit directly from donating my cancer cells since it can take many years for researchers to obtain results that can be used in a meaningful way. So why did I donate my cells? Because I have already benefited from significant medical advances made as a result of people generously donating biological samples. I hope that my donation, like those of other donors before me, will help generate new knowledge that leads to more effective therapeutic treatments that will help future patients.

Most Americans know that when they obtain or renew their driver’s license, they can also register to donate their organs, eyes, and tissue when they die. But many people are still unaware of the need for biological samples such as tissue, cells, and blood, which can be donated while you’re still alive. Samples like these go to biobanks for scientific and medical research.

Donations to biobanks are invaluable. Among other things, they help researchers understand how diseases develop, including the roles of genetic and environmental factors; identify disease-associated biomarkers; develop new diagnostic methods, drugs, and therapies; improve patient care; and facilitate precision medicine.

There is also a need for the donation of normal healthy tissues to study normal physiology and the initiation and progression of breast cancer. The Susan G. Komen Tissue Bank at the Indiana University Simon Comprehensive Cancer Center collects healthy tissue and blood from donors who show no signs of breast cancer so that cancer researchers can use this tissue to characterize normal breast development and compare it with the different types of breast cancer. The goal is to understand the molecular and genetic changes that occur during disease progression so that the information can ultimately be used to help prevent and treat breast cancer.

Biobanks are not just for cancer. They are also utilized in research to study a multitude of diseases including diabetes, Alzheimer’s, and tick-borne Lyme disease. Even if you aren’t sick, you can donate your blood, saliva, urine, stool, or tissue to a biobank. The Mayo Clinic Biobank, for example, isn’t focused on any particular disease but rather, it collects biospecimens from both patients and volunteers regardless of health history in an effort to advance precision medicine.

As a biology professor who studies breast cancer, I am grateful to those individuals who chose to donate their cancer cells for research purposes. I have regularly used breast cancer cell lines in my research, including MCF-7, a cell line established by and named for the Michigan Cancer Foundation, which came from a 69-year old woman with metastatic breast cancer. MCF-7 has been used as a model cell line for research worldwide since 1973. Studying MCF-7 cells led to the understanding that the hormone estrogen attaches to estrogen receptors on the cells to stimulate cell division and promote tumor growth, while the anti-estrogen drug tamoxifen inhibits cell growth. Tamoxifen, the first targeted cancer therapy, has become the standard therapy treatment for ER-positive breast cancer patients. Basic research with MCF-7 cells has produced a tremendous amount of data, which has translated into practical knowledge for patient care in the clinical setting.

The Cancer Moonshot Biobank, run by the National Cancer Institute, is part of an initiative to accelerate cancer research and learn how cancers behave over time. Samples are collected from cancer patients so that researchers can study how cancers respond to various treatments and determine why some cancers become resistant to treatment.

Willingness to donate to biobanks relies on trust. It is critical that these organizations obtain informed consent from all donors and follow policies to ensure the privacy and confidentiality of information linked to samples. Unfortunately, that hasn’t always been the case. In 1951, cancer cells from Henrietta Lacks were obtained without her knowledge or consent after surgery for ovarian cancer. At that time, there were no federal regulations regarding the use of patients’ cells in research. Her cells, known as HeLa cells, became the first immortal cancer cell line to be grown in the laboratory and have been used in scientific research to develop cancer treatments, vaccines, in-vitro fertilization techniques, and gene mapping.

Obtaining cells from Lacks without her consent was deeply unethical. Since that time, significant policy changes have been made to protect research participants, including the requirement of informed consent. Samples are now anonymized before researchers can use them, thus maintaining donor privacy to linked health data. Furthermore, the Genetic Information Nondiscrimination Act of 2008, a federal law, makes it illegal for health insurance companies and employers to discriminate against people based on genetic information. The Lacks family now has a say in determining which researchers have access to Henrietta Lacks’ whole genome data, and they continue to serve as advocates for policies that build trust and protect research participants while advancing science.

Donors also have a say in determining how their samples will be used and what information will be shared with them. Some biobank studies allow donors to consent to getting their DNA results, which can include information about whether you have a greater risk for developing a particular disease or health condition and how you might respond to certain medications. In the case of my donation, in the event that the researchers learn of genetic testing results that may be important to my health, they may seek appropriate approvals to contact me to find out if I would like to learn more. While the results of studies using my cells will most likely not be shared directly with me, publications using biobank samples are cited in the PubMed database from the National Institutes of Health’s National Library of Medicine, so I can keep apprised of the overall research outcomes.

A challenge in soliciting biobank donations is that there is not a centralized website like there is for organ donation. Community hospitals, academic institutions, and Veterans Affairs medical centers all have their own biobanks. Thus, it is incumbent on the NIH to partner with health care provider organizations and physicians to raise awareness about the need for biobank donations and to recruit participants.

The Department of Health and Human Services should create a centralized biobank website, as they have done for organ donation, to educate the public and enable people to learn more about how to donate. Being able to search this website by state and health conditions would greatly enhance the grassroots efforts by individual physicians, health care centers, and advocacy organizations. More donations in turn, will further facilitate scientific progress in an effort to ultimately help improve patient care and ideally lead to more favorable health outcomes for all patients.

Kimberly M. Baker is an associate professor of biology at the University of Indianapolis and a visiting scholar of pharmacology & toxicology at the Indiana University School of Medicine. She is a public voices fellow with The OpEd Project.