Let’s assume you’ve acquired a grant to begin a research study to investigate the spread of a certain disease in a population. So you gather your samples, do your research and publish your findings. Then out of nowhere, law enforcement shows up with a court order to obtain a sample from your collection that will help in the legal prosecution of one of the participants of your study.
As a researcher, would you find it unethical for the police to take your research samples without the participants’ consent or knowledge? In an essay authored by Nina de Groot and her colleagues, which discusses access to medical biobanks in order to solve crimes, we look into ethical considerations. This essay, which was published in the “Journal of Medical Ethics,” explored the ethics of law enforcement’s access to biobanks through the lenses of justice, autonomy, trust and confidentiality.
The authors from the University of Amsterdam assert that one of the major challenges is the desertion of trust and confidentiality doctors and patients would have in their relationships once law enforcement was given access to medical biobanks. When patients feel hesitant to reveal relevant information to doctors or begin avoiding health care because they lack trust in their health-care providers, this can cause public health risks, inefficient treatment or wrong diagnoses.
Earlier in September, the biggest international survey ever conducted on genomics found that less than half of the individuals who participated in the survey would share their DNA for medical and research purposes; trust was cited as the major factor influencing that decision.
At this point, trust in the government, medical professionals and researchers is low. So wouldn’t allowing police access to medical biobanks only worsen this?
Separate empirical research cited by the study’s authors suggest that biobank participants are more concerned about trust and confidentiality issues. For example, a survey that was carried out in the United States which involved 4,659 participants of a biobank revealed that 75% of those participants were skeptical about the government having their information and samples. Additionally, 84% of the participants stated that they found it important to have a law that protected research information from law enforcement agencies.
Currently, legislation that addresses the forensic use of biobanks differs worldwide. For example, while the United States has no existing legislation, Estonia and Finland have explicit laws that prohibit forensic use of biobanks (FUB). In the Netherlands, the Dutch Human Tissue Act is a bill that allows FUB for the investigation or prosecution of serious crimes such as rape or murder.
The study concluded that, in the end, it comes down to a delicate balance between criminal justice and ethical harm. Consideration should be given to the urgency to solve the crime and the presence of alternatives other than forensic use of biobanks.
Many entities are involved in biomedical research. One interesting company you should watch is Predictive Oncology (NASDAQ: POAI). The company focuses on using data and artificial intelligence to find the best ways to deliver effective personalized cancer treatment.
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