As scientists continue to delve deeper into precision medicine, the need for biodiversity in biospecimens becomes even more imperative. While high-quality biospecimens are essential components of clinical research, the characteristics of the specimens are of no less importance.
Clinical research plays a critical role in accelerating our understanding of diseases and their possible risk factors, thereby supporting the development of appropriate methods for disease prevention and treatment. For biobanks to have an assortment of specimens at hand at any given time, there’s a need for frequent specimen donation from the public. There have been exciting advances in precision medicine, such as cancer care which would not have been possible without the use of donated samples. However, obtaining sample donations from the public has not been easy and hence there’s a need to address the possible barriers and create better inroads to promote specimen donation at the grassroots level.
What Entails Biospecimen Donation?
Biospecimen donation is the “giving away” of biological samples by both patients and healthy individuals for use in ongoing clinical research or futuristic research. Human biospecimens carry a lot of information which researchers can use to better understand diseases and find better approaches to treatment. Donated biospecimens are usually stored in a biobank when they are not used immediately.
Predictors of Willingness to Donate Biospecimens
Not many people are willing to donate biological samples for use in clinical research. A few studies have been conducted to examine some of the factors that influence people’s decisions to either donate or decline to donate biospecimens. Remember that at the end of the day, individuals have the right to either decline or accept to donate their samples for research.
A 2021 study that was published in the Journal of Immigrant and Minority Health highlighted a number of factors that predict willingness to participate in specimen donation. The researchers found that age, ethnicity, level of education, and area of residence play a role in participants’ willingness to donate samples. Not having at least a high school diploma, and also being aged between 35-44 were linked with reluctance to donate. The researchers also found that participants were more willing to donate samples if cancer was involved and a family member of the participant had cancer. In this case, the researchers also found that willingness to donate samples can be disease-specific. Lastly, researchers also observed that participants were more willing to donate if they had done so previously.
What Are the Barriers to Specimen Donation?
Individuals may be willing to donate their samples but still face barriers. This includes issues such as religious and cultural beliefs about donating biological samples, especially when blood is involved. Ethical issues might also arise relating to who is collecting the sample, how it is being collected, and how the sample will be used. Medical mistrust may also create a barrier especially when the community is not familiar with the medical or research team that is requesting the samples. When participants perceive no benefit from the exercise, they may be unwilling to offer their samples. Lastly, the perceived discomfort associated with the procedure of collecting the specimens can be a deterrent as well.
The researchers from the study mentioned above noted two striking findings. Federal government involvement in the process, but not the Community Health Service, acted as a barrier to specimen donation. In addition, participants were less likely to donate their specimens if they were not familiar with the research experience of the researchers and if the exercise had not been approved by the local leaders.
Bridging the Gap to Specimen Donation: 5 Areas of Awareness
Given the centrality of donated biospecimens in clinical research, it is important to address the challenges derailing the practice. The knowledge gap is a significant barrier to specimen donation.
Creating knowledge and awareness of consent
The first step in bridging the gap is to obtain proper consent from potential participants. The first thing that participants should know is that their consent is free-will and they should not be coerced or enticed to donate their samples. The consent needs to outline why the samples are needed and how they will be used. The participants need to be aware that their privacy will be safeguarded at all costs. Here are five key awareness areas that should be addressed.
Busting political, ethical, and medical myths on specimen donation
The research team needs to identify any existing political, ethical, or social myths that may act as barriers and address them adequately.
Creating knowledge and awareness on how and where the donated samples will be used
Understanding how donated samples will be used affects the willingness of participants to donate samples. The research team, therefore, needs to explain why and how the exercise will benefit the participants or other people who might be suffering from different diseases.
Creating awareness about the academic and other relevant credentials of the researchers
Participants are more willing to donate samples when they are aware of the academic qualifications of researchers and previous research that they have been involved in. It is, therefore, important to highlight these factors to the participants prior to the process.
Involving the local community in the process
Local community leaders need to be engaged before seeking participation by community members. The leaders will be able to address some of the cultural and spiritual beliefs of the community that may act as barriers to the process. Engaging the local leaders will also help to instill confidence among community members.
How Does a Biospecimen Management System Help Manage Donated Biospecimens?
Once samples have been donated, they will need to be stored in a biobank for research use at a convenient time. A biobank holds a vast amount of samples and the related metadata that needs to be safeguarded against any form of a breach or malicious manipulation. A Biospecimen Management System is a software that can be used to automate sample management in a biobank and manage donor consent seamlessly. A cloud-hosted biospecimen management system also manages the entire workflow of the biobank, enables data sharing and collaboration among researchers, and enables secure and remote access at all times.
How DoesSpecimen Donation Support Precision Medicine?
Precision medicine is geared towards finding specific treatment options for patients that are tailored to an individual’s unique characteristics, such as their genetic makeup and lifestyle factors. Sample diversity, which relies heavily on sample donation, is the bedrock of precision medicine. Research has found that as much as individuals may be willing to donate their samples for research, several barriers might limit their participation. Knowledge and awareness are needed to address the existing barriers.