A policy forum published in Science argues that using the same DNA markers in human tissue research that are used in law enforcement undermines public trust and hinders participation in biomedical research.
To move forward, authors Debra Mathews from Johns Hopkins University and Natalie Ram from the University of Maryland, assert that the biomedical research community needs to identify and use DNA markers that are different to those used by the legal system.
The article is largely US-focused but has implications for other countries that use DNA databases.
Much of the research community is currently using frameworks developed for law enforcement to describe and authenticate biospecimen research samples.
In 2015, the US National Institute of Health (NIH) began requiring “authentication of key biological and/or chemical resources,” including cell lines and human tissue.
The authentication is usually based on a well-characterized set of short tandem repeats (STRs) –DNA sequences that vary greatly in length between individuals. By typing multiple STRs, researchers can differentiate a bio-sample from one individual from that of another individual. The technique is convenient and uses commercially available kits.
But the STR method and kits are the same as those used by the police and law enforcement —not just in the US but in other areas such as Europe and Japan — to match DNA samples taken from crime scenes with those from arrestees and convicted offenders.
The Combined DNA Index System (CODIS) database is built and maintained by the Federal Bureau of Investigation (FBI), containing more than 19 million known DNA profiles. The research community largely adopted this readily available framework to fill an unmet need for labelling and authenticating research tissues and cell cultures.
According to the authors, using the same markers will mean that “NIH’s authentication guidelines will lead to increasing numbers of researchers developing and reporting information about research subjects that corresponds precisely to the data that law enforcement typically uses to develop an investigative lead.”
This is a serious misstep, say the authors and could undermine public trust in science and may stop people from wanting to take part in research studies. People from historically marginalised groups are likely to be most impacted, as many groups are disproportionately overrepresented in the criminal legal system yet underrepresented in medical research.
Mathews and Ram identify three risks that could arise from the continued use of CODIS markers for authenticating research samples:
1. Undermining efforts to recruit research participants from underrepresented groups
If the language that is used to describe people and samples in research is the same language used in law enforcement, that is likely to affect how potential research participants frame and understand the research. For many populations, the effect is likely to be negative.
2. Drawing increased law enforcement interest in gaining access to research data
Requiring researchers to generate data that is directly relevant to and usable by law enforcement might invite law enforcement interest in this genetic data. Guarding research subjects’ identifying information to reduce the risk of re-identification is unlikely to offer sufficient protection.
3. Imposing additional potential harms on already vulnerable populations, particularly children.
Biobanks often include samples from infants and children. Including samples in biobanks is generally considered minimal risk. But rapid changes in genetic technology and the changes in the research, consumer and legal landscapes increase the risk. This is exemplified by the use of consumer genetics data to solve crimes. For healthy children, this increased risk (in the absence of benefit) means their participation is ethically problematic.
Mathews and Ram propose transitioning away from CODIS markers by developing an independent framework for authenticating bio-samples.
The first step needs to be the immediate removal of CODIS-based authentication of cell lines and other bio-samples from websites, making the information available only upon request. In addition, alternatives such as non-CODIS STRs or single-nucleotide polymorphisms should be considered. Finally, given that forensic DNA is used against the individual from whom it was taken, whereas research DNA is given altruistically, the silos around forensic data and research data should be strengthened.
The authors emphasise, “As we have learned repeatedly over the past 2 years, trust in science is critical to both individual and public health.”
Written by Charlotte Harrison, Science Writer
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