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. But what if that decision wasn’t left up to the individual? What if they visited their doctor for a medical issue, only to have law enforcement seize their biological sample years later for an investigation?
That’s what happened to the daughter of Dennis Rader, the BTK killer. And 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, kept in a university clinic she visited for cervical cancer screening?
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.
While it is unknown precisely how often law enforcement requests or obtains material from medical biobanks, there are several documented global case examples, the BTK Killer being the most famous. Ultimately, the authors conclude it comes down to an incredibly delicate balance between ethical harm and criminal justice.
Confidentiality
If law enforcement is allowed access to medical biobanks, there is an automatic abandonment of patient-doctor confidentiality. The main problem with that is it could damage trust in the patient-doctor relationship, ultimately leading to people avoiding care or not disclosing relevant medical information. This, in turn, can lead to a wrong diagnosis, inefficient treatment or public health risks, which could ultimately result in more harm than keeping confidentiality. In this scenario, the balance is weighted away from law enforcement.
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 as 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.
Trust
Will patients truly lose trust in their doctors, leading to an erosion of the relationship, if FUB is allowed? The study authors found there are clear indications FUB had a negative effect on trust, but the evidence is too limited to estimate the size of that impact. The counterargument to this is FUB would only affect the trust of a small criminal portion of the population. However, the authors found that is not necessarily true.
“FUB could deter other patients who could reason that, somehow, in the future they may be sought by the police (because who knows which path life or politics will follow). Perhaps this is more likely in patients who already encounter symptoms of anxiety or paranoia,” the authors write.
Autonomy
Respect for a patient’s autonomy is a core principle of biomedical ethics, however, in all the cases profiled in the authors’ paper, not one patient gave concept to the collection of their biomedical samples. In the case of the BTK killer, the daughter was never involved or suspected of a crime, yet she was bypassed during the collection process.
While the authors say creating a system of informed consent is too large-scale and laden with problems, they acknowledge the second-best option would be to limit FUB as much as possible and ensure donors know about the possibility of forensic use.
Justice
The main concern regarding justice comes down to equality. As a direct function of their role, many biospecimen archives in hospitals contain an overrepresentation of sick individuals as compared with healthy ones. Therefore, law enforcement access to these biobanks targets ill individuals disproportionally, giving them a higher risk of being arrested than those who are healthy and never had to provide a medical sample.
“The chance of being prosecuted should not depend on whether or not one’s kidney tumour is stored in a hospital’s basement,” the authors write.
Additionally, health problems are directly related to poverty, especially in the United States and other countries without universal healthcare. Therefore, FUB could also disproportionately affect poor individuals, who are already under a greater risk of being targeted by police.
Balancing Act
Ultimately, the authors conclude the attempted balance of ethical harms and criminal justice benefits comes down to 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.”