Biobanking Is Changing The World

By | August 12, 2019

With the evolution of biobanks rapidly enabling the creation of massive collections of biological material and associated information, how are these collected terabytes of data transforming nations?

Introduction

Biobanking is here. Artificial Intelligence (AI)-driven process automation, data analytics, robotics, the internet, and other rapidly emerging technological advances are driving the revolution of biobanks, biorepositories, and biospecimen science. With the evolution of biobanking from a simple collection of frozen specimens to the virtual biobanks and bioscience seen today, the rise of biobanks brings each nation and its healthcare and economic systems a transformative potential. 

The immediate focus of rapidly developing biobanks seems to be on disease understanding, drug discovery, and development. Furthermore, as biobank research hopes to provide new insights into the genetic component of human disease, another focus is developing an automated and a more personalized approach to healthcare.

The broader focus, however, seems to be not just on the human healthcare revolution. Biobanks focusing on animals, plants, and microbes are also evolving rapidly. From disease-centric biobanks to population-based banks, genetic banks, DNA/RNA banks, blood banks, tissue banks, virtual biobanks, microbiome banks, stem cell banks, and more, there are several types of specific project-driven, public and private biobanks across nations.

Evolution of Biobanks

The evolution of biobanks is rapidly enabling massive stores of human biological material and its associated information along with nonhuman materials: plants, animals, microbes, and more to be collected for use in agriculture, ecology, medical research, and drug development. There is a hope that the evolution of diverse biobanks and sharing capabilities will revolutionize research leading to personalized medicine and more.

With data no longer remaining in one laboratory ownership and when scientists can now begin to store large amounts of human biological and genetic data in community places for the broader research community to use and share, the potential of advancement increases enormously. Moreover, the technological advances are now enabling the widespread sharing of information, and many scientists from many laboratories (with or without any affiliation) doing similar work can access the data from biobanks. It is not only the collection of genotypic data but also the related phenotypic data that is also now being collected and stored and made widely available to researchers who needed it.

Acknowledging this emerging reality, Risk Group initiated a much-needed discussion on Biobanking with Dr. K. Stephen Suh, on Risk Roundup.

Disclosure: I am the CEO of Risk Group LLC.

Risk Group discusses Biobanking Trends with Dr. K. Stephen Suh, a Precision Medicine Expert, based in the United States.

Towards Personalized Medicine

Personalized medicine and the development of new drugs will arguably play critical roles in human health, so access to high-quality biospecimens from biobanks becomes fundamental. Understandably, biobanking is becoming crucial for furthering biomedical and translational research. 

It is said that one of the ultimate aims of biobanks includes promoting human health and the well-being of the community. To get timely diagnoses and treatments requires identification of biomarkers that would be useful for early detection, prevention, and treatment of diseases that are associated with specific medical conditions such as cancer, cardiovascular disease, neurological disorders, and many other disorders. The ability to determine specific biomarkers for disease diagnosis and prognosis of therapeutic response will have a meaningful impact on personalized medicine. It is rapidly changing the way clinical care is conducted and will be conducted across nations. Since a crucial requirement for personalized medicine is the availability of an extensive collection of human samples (both diseased and healthy) with well-documented phenotypic data, biobanks are on their way to playing an essential role in the advancement of personalized medicine.

Nation Preparedness

Do all nations have biobanks and the technology necessary for them? While it seems that in many developed nations biobanks are well established and are generally well-funded and supported, there are also biobanks in some developing nations as well. However, the question remains whether all nations have the technology and process infrastructure to have state of the art biobanks.

Infrastructure is necessary because if nations do not have adequate public support, basic internet connectivity, access to reliable water, stable electricity supplies, effective processes, policies, people, and regulations, a nation’s efforts and investments in biobanks will likely not succeed. It is essential that optimal conditions are maintained for each biobank. That brings us to an important question: are there any guidelines and standards about biobanking? Individually and collectively, are we making biobanks safe and reliable spaces to store human and non-human material for advancing trustworthy science that can save lives?

Complex Challenges

From the collection of samples to storage and documentation to timely access to specimens and donor information, questions are emerging about ownership and consent for research. There are also growing questions about who owns the samples and data. Beyond ownership, what happens to the terabytes of data that is collected every day: how is it stored and secured?

While electronic medical record (EMR) systems are being implemented worldwide and clinical data associated with biospecimens are becoming readily available to biomedical researchers, in order to have biobanking driving the healthcare system of tomorrow, many complex challenges still need to be overcome. From proactive participation from the human population to state-of-the-art infrastructure, global standards to necessary regulatory controls, various issues need to be overcome to benefit from the revolutionary potential of biobanking.

Since the primary role of biobanks is to collect, catalog, and store biological samples and associated clinical data, they must also act as data guardians, responsible for ensuring patient privacy and data security. There is also a need to safeguard integrity in the way samples or specimens are collected and stored, ensuring they are only used for their intended purposes. Biobanks have already sparked debate due to concerns about the ethical, legal, and social implications surrounding the utilization of samples and data, e.g., consent, privacy, and confidentiality concerns. So, how are data privacy and security enforced at biobanks? How is the integrity of the samples collected maintained?

While biobanking is identified as a critical area for infrastructure development for drug discovery and development, it is vital to understand all the societal, technological, process, policy, legal, and ethical issues to better understand the challenges of biobanking broadly.

The Rise of Clinical Labor

In any discussion about biobanking, the rise of clinical labor must be addressed. Clinical labor refers to the trend of individuals across nations paying to participate in genetic testing for health or ancestry reasons. For genomic research, there is a strong underlying economic incentive for the systemic collection of samples. Beyond the direct to consumer genetic testing that is at the center of the growing debate, tissue material and other biological samples collected from the population are also coming into play. The question that is emerging is whether the human participants should benefit from their clinical data financially by being the clinical labor force for the advances in healthcare? Just as many are asking whether individuals should own and profit from their online data — which companies have been using for many years with little to no consent — should individuals retain agency over their genetics?

What Next?

As biobanking is expected to change the world and is rapidly becoming a key area for infrastructure development, the hope is that the growing investments will enable scientific progress that will powerfully shape a nation’s economy by influencing our knowledge about human health, disease, drugs, personalized medicine, and more. The time is now to focus on biobanking and understand its risks and rewards.

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Forbes – Healthcare