In this article, the term “tissue” will be used to refer to subcellular structures (such as cells and DNA), organs (heart, liver, kidney, bladder), bone, muscle, connective tissue, blood, embryos, gametes, and waste. Human tissue can be stored in various forms such as frozen tissue, formalin-fixed paraffin-embedded (FFPE) tissue, tissue culture, or extracted DNA. Tissue samples collected can be used to aid diagnosis and make decisions regarding treatment options. There are at least three types of tissue in research:
Excess normal tissue
Excess tissue taken from the patient for diagnosis and treatment
Tissue that has been taken specifically for research
The research performed on these tissues can help to provide literature that can improve diagnosis, treatment, and prevention for various diseases in the future. When a tissue sample has accompanying patient information, it becomes even more valuable to the research community. This means that many donors are asked to donate both tissue samples and medical information.
Why Should Cancer Patients Consider Donating Their Tissue?
Cancer patients should consider donating their tissue for two main reasons:
Research using these tissues may help them to deal with cancer as it is doing something good in return.
These tissues can help improve the understanding of the disease and can result in better diagnosis, treatment, and prevention for other cancer patients in the future.
For example, the tissue can help healthcare professionals and researchers to understand which type of therapy will be suitable for different patients or to have lesser side effects from a specific drug. Although the donor may not benefit directly from donating the tissue, the research can benefit other patients in the future.
Based on a survey conducted by the National Cancer Institute (NCI) in the United States, more than 90% of patients have stated that they would be willing to donate their tissue and data for research purposes. These participants have also requested that the tissue be used for “good” to advance the treatment for future patients. These patients also felt that it would be worth it as their contribution may lead to cures or improve the prognosis for future patients. The MONICA project in Sweden also reported as many as 93% of eligible participants consented to use their stored samples for academic research 11 years after sample collection. While tissue is critical for diagnosis and staging of cancer, it also plays an important role in treatment decisions and to give the patient the best prognosis.
Risks to Donors When Donating Tissue Samples
Depending on the type of tissue being donated, there may be bruising or swelling where the tissue is obtained, increased risk of infection, and pain at the site where the tissue is obtained. When tissue is removed as part of treatment, the residual tissue after diagnosis can be saved and stored in paraffin wax. There is also the risk of loss of privacy and breach of confidentiality. The information of donors may be accessed by others in a way that is harmful to the participant. Some donors are also concerned regarding insurance discrimination, employment discrimination, and potential family conflicts over the information disclosed to researchers.
Contributions of Tissue Samples to Research
Among some of the notable advancements in the research field due to donations of tissue samples are:
Learning how cancer cells work – The study of tissue samples has led to the discovery of how cancer cells work. This knowledge has enabled researchers to predict the treatment outcome and type of treatment used for various patients. For example, researchers were able to understand the role of estrogen receptors in breast cancer cells.
Finding targets for new drugs – There are some medications that help stop the growth of certain cancers by targeting the molecules that send signals to cancer cells. For example, Gefitinib and erlotinib target the gene that produces the epidermal growth factor receptor (EGFR) that is found on the surface of cancer cells such as lung and pancreatic cancer enabling them to grow and spread.
Identifying causes of cancer – When tissue samples are analyzed, it may help in the identification of the causes of cancer. Tissue samples can help link factors such as environmental exposure and genetic factors as possible contributors to cancer. Examples include microorganisms, parasites, diet, culture, lifestyle choices, and toxins. The information obtained from the tissue can help researchers understand how ethnic, familial, and personal factors affect cancer susceptibility.
To ensure the confidentiality and privacy of the donor, there are laws and regulations that govern how tissue samples are collected and the information that must be provided to donors before obtaining consent. Informed consent regulations require the explanation of how the tissue and medical information will be used and stored. It should also include the risks involved in obtaining the tissue, when and how the samples will be obtained, and how privacy and confidentiality will be protected.
The importance of tissue samples in research. Research Advocacy Network. Accessed 9/23/2019. https://researchadvocacy.org/checkout/1112/complete