Say you receive a private grant to start a research program that studies disease spread within a specific population. You’re excited, as you should be. You collect samples, conduct your research, publish your findings and feel positive about what you have accomplished and what you have added to the scientific literature. Then, law enforcement obtains a court order to collect a sample within your collection in order to aid the legal prosecution of one of the study participants.
Or consider this scenario: a young woman comes to the university clinic you work in seeking a Pap smear to ensure she does not have cervical cancer. A sample is taken, tested and the remainder is stored for future research endeavors. Then, law enforcement seizes the sample because her father is a murder suspect and police need a sample to compare with DNA left at crime scenes.
As a researcher, how would you feel? Would you find it unethical for police to collect your research samples without participants’ knowledge or consent? Or would you be unbothered in the name of criminal justice? Both circumstances have occurred—the first in Scotland, the second in the United States.
While in Glenochil Prison (Scotland), Stephen Kelly had himself tested for HIV as part of a research program examining heroin needle sharing in prison. Later, a molecular research program showed that a woman (who later turned out to be Kelly’s former girlfriend) had the same HIV strain as the Glenochil Prison strain. To prove Kelly knowingly infected his girlfriend with HIV, the persecution needed evidence that the suspect knew he had HIV the moment he met his girlfriend. Therefore, backed by a court order, the persecution obtained the HIV blood test Kelly volunteered in prison, leading to his conviction and imprisonment.
Andrew Leigh Brown, principal investigator of the HIV & Flu Research Group based out of the University of Edinburgh, was responsible for the prison research program—and he was displeased when the police stepped into it.
“The thing that concerned me was that these samples were presented as part of a bona fide research program and in confidence, and I was frankly appalled when this information was pulled out as part of this investigation, and there seemed to be nothing I could do about it,” Brown said in a paper on the topic published shortly after the incident occurred. “As far as my own research is concerned, I wouldn’t touch another molecular epidemiology investigation in Scotland unless there is some clarification of whether this seizure of material is or is not appropriate.”
While Brown was vocal about his opposition to police interference, less was made of the Pap smear scenario, possibly because the daughter’s father was a suspect in an infamous case. Police suspected Dennis Rader was the BTK killer, an individual who murdered at least 10 people between 1974 and 1991 using binding and torture techniques. Police did not have enough evidence to prosecute them, so they seized cervical cell material of Rader’s daughter, held in a university clinic, to compare it with DNA found at crime scenes. A partial match was found and Rader was arrested and convicted.
While the significance of getting Rader off the streets and into prison cannot be understated, was it ethical to do so by seizing his daughter’s biological material? That’s one question of many author Nina de Groot and colleagues address in their essay “Accessing medical biobanks to solve crimes: ethical considerations,” published in the Journal of Medical Ethics. The authors, a multidisciplinary team from the University of Amsterdam, explore the ethics of law enforcement access to biobanks through the lenses of confidentiality, trust, autonomy and justice.
One of the biggest problems, the authors write, is the abandonment of confidentiality and trust patients and doctors would experience in their relationship if law enforcement was allowed access to medical biobanks. If individuals are hesitant to share relevant information or start avoiding care altogether due to lack of trust, this can lead to wrong diagnoses, inefficient treatment, and public health risks, including a possible outbreak of infectious disease.
Last week, the largest-ever international survey on genomics found that less than half of those surveyed would share their DNA for research and medical purposes, citing trust as a major factor in their decision. With trust in researchers, medical professionals and the government already low, would allowing police access to medical biobanks make it worse? Unrelated empirical research cited by the study authors suggests biobank participants are equally if not more concerned about confidentiality and trust issues. A U.S. survey of 4,659 possible participants of a biobank showed that 75% of participants were concerned about the “government having their samples and information.” In addition, 84% said they found it “important to have a law protecting research information from law enforcement officials.”
Currently, legislation addressing forensic use of biobanks (FUB) differs globally. In Finland and Estonia, for example, there are explicit laws that prohibit FUB, while the United States has zero legislation in favor or opposition of. The Dutch Human Tissue Act, a draft bill in the Netherlands, would allow FUB for the investigation of prosecution of serious crimes only, including murder and rape.
Ultimately, the study authors conclude it comes down to an incredibly delicate balance between ethical harm and criminal justice, citing two specific components: : (1) whether there are alternatives to FUB and (2) urgency to solve the crime.
When a suspect is known, there are often multiple alternatives to obtaining a DNA sample, such as a toothbrush, discarded coffee cup, familial testing or even discarded face mask in the age of COVID-19.
“It might, for example, have been possible to find a discarded cigarette butt of the BTK suspect rather than accessing his daughter’s Pap smear,” the authors write. At the same time, they do leave a clear path for cases where there is no clear alternative than obtaining medical tissue samples.
Secondly, de Groot et al. place critical importance on urgency of an investigation—the urgency to find a criminal you know will kill within days or weeks is much higher compared with solving a decades-old cold case.
“Breaching confidentiality is usually justified in the context of crime prevention, not the investigation or prosecution of that crime,” reads the paper.
The study authors are quick to emphasize the need for further research on each topic in order to provide future ethical guidance and inform public debate.
“Although FUB apparently does not occur frequently at the moment, rapid technological developments in the field of genetics could make it more common in the near future,” say the study authors. “Even a small number of high-profile cases may have a considerable impact on people’s health behavior and their perception of healthcare and its core values.”