When John Q. Donor is asked if he wants to contribute “leftover” material from his surgical procedure to a biobank, what thoughts run through his mind?
Does he deliberately weigh the proposed pros and cons of the research project? Does he wonder if he’ll see the results from his individual sample? Perhaps he reflects on the religious implications of his choice . . . or is his decision to participate (or not) based on something completely different?
Naturally, biobankers would jump at the chance to be able to read the minds of research participants. After all, if they knew exactly what prospective donors were thinking, they’d be able to address concerns and increase participation.
Unfortunately, though, technology for “mind reading” isn’t quite where we’d like it to be for scientific research (!), and so researchers have to rely on randomized surveys to capture the public viewpoint regarding these issues. Over the past few years, several universities, hospitals and biobanks from around the world have surveyed people asking what makes them want to participate in a research biobank. We’ve perused the literature for you, and found these are among the top factors that play a role in a donor’s decision:
As we have discussed before, different biobanks operate under different consent models. As it turns out, some studies now show the disparity between broad and dynamic consent can be major concern for potential biobank donors.
For example, a survey of more than 1,000 Finns revealed that many have a preference for a rigorous consent process. In fact, 40 percent said it’s important to regain consent when the study takes a new direction, and one-third said they would like to be asked for consent with every new research project.
Consent is also important when researchers want to use clinical data associated with a sample. The majority of those in a study of Swedish adults didn’t want their medical records accessed without prior consent.
Cultural and religious acceptance
A study from Jordan found that religious permission had the strongest positive influence on a respondent’s decision to participate in biobank research. These results underscore the fact that biobankers must pay careful attention to the cultural and religious norms where they are conducting research.
Access to individual results
Researchers in the United States used focus groups to evaluate public opinion on expected returns from biobank research. The majority of participants in this study wanted to receive results from the research conducted on their specific sample if it identified a treatable condition. However, opinions were mixed if the result implicated an untreatable condition or if the results were purely speculative.
Modern medical research depends on large numbers of people donating material to biobanks. Fortunately, it appears that, in general, there is broad-based support for the biobanking process and the use of biosamples in research. But even so, biobankers must proceed with caution and pay attention to the multiple dimensions of the biosample collection process – including those mentioned above – not only to maximize the numbers of donors, but to maintain the public’s support, as well.