The Importance of Biobanking

The Importance of Biobanking

Biobanking is the practice of collecting and storing human tissue samples and related data (such as height, weight, and family health history) for research. Tissue samples and data from biobanks help researchers understand diseases and the role of genetics in how individuals resist and react to disease. Many people recognize the importance of biobanking, but researchers and ethicists have debated concerns about privacy and the individual right to control how researchers use samples of body tissue.

The most notorious case of a kind of biobanking is the story told in Rebecca Skloot’s The Immortal Life of Henrietta Lacks. This nonfiction book details how cells from Henrietta Lacks, an African-American woman who died of cancer in 1951, were taken without her consent and used in research for decades without her family’s knowledge. Research based on so-called “HeLa” cells has generated huge profits for large corporations.

An essential tenet of scientific research is reproducibility of results. The slightest alteration in control conditions can foul an entire experiment. However, biobanks employ levels of quality control that improve the consistency of samples and therefore the reliability of experimental results. Plus, Preservation and transportation of specimens from biobanks is subject to international standards to ensure quality and consistency. Much of the data collected from and the research developed with the help of biobanks is now available in computer databases that support medical research and offer the promise of faster progress toward understanding and curing disease.

Information privacy and patient consent are now critical to the operation of biobanks. Samples may be stored in biobanks indefinitely, and gray areas still exist. Debate is ongoing about whether companies that profit from products or research developed through biobanked specimens should financially compensate people whose tissue samples they used in developing those products.

Debate about the ethics and the importance of biobanking, the stringency of standards that require consent, and the rationale for compensation will continue. Biobanked samples, however, help scientists research and develop treatments for vaccines against diseases and new medical procedures such as in-vitro fertilization. Henrietta Lacks’ cells, for example, helped develop the polio vaccine, and her legacy has saved lives the world over.

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