Genetic Privacy and Forensic Investigative Genetic Genealogy
Today and Tomorrow
Written by Clarice Jacobson, Baylor College of Medicine
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It has been nearly 40 years since DNA evidence became available to forensic investigators, and more than 800 cases have been solved with the help of forensic investigative genetic genealogy (FIGG) over the past 5 years. What have we learned, what are the risks and protections to consider, and what can we expect for the future?
The panel discussion at ISHI 34, moderated by Dr. Amy McGuire, will engage in deep and inquisitive discussion about genetic privacy and explore how to strike a balance between laws and policies that protect individuals and the benefits of technology and public safety. Panelists Drs. Bruce Budowle, David Gurney, Ray Wickenheiser, and Christi Guerrini will provide an overview of investigative and forensic procedures, highlight the key ethical considerations with a specific focus on informed consent, discuss legislation aimed at protecting citizens’ genetic privacy, and share findings from a recent survey on public acceptability of various applications of IGG and its potential oversight.
Current Procedures
Investigative and forensic procedures are constantly evolving with advancements in technology and scientific research. Dr. Ray Wickenheiser will delve into some of the factors and scenarios for involving biological materials and DNA in investigations and how the circumstances of their deposition, discard, and collection, may differentiate how they should be considered.
There are several types of samples directly related to the suspect. For example, a discarded sample left by a perpetrator when committing a crime, such as semen left on the person of sexual assault homicide victim. A second category of discarded sample typically employed in criminal case investigations is that of an item discarded by a person of interest, such as water bottle utilized by the suspect in that sexual assault homicide. That discarded water bottle may be collected by law enforcement to gather a reference sample which would be compared against the DNA found at the crime scene. The third scenario is a third-party sample taken from a person known to be innocent of the crime, however, may be a family member of a suspect, whose DNA may assist in genealogical research used to help solve the sexual assault homicide case.
There are also samples that are extraneous to the suspect that may be useful to the investigation process. For example, staff databases are created with DNA obtained by individuals handling forensic samples, to examine crime scene profiles in case contamination has occurred so staff are not erroneously entered into the database as potential suspect profiles. Elimination samples are very similar, except they are taken from individuals connected to the victim of the crime whose DNA may be present in the crime scene sample, such as a spouse or significant other, so their DNA profile is not thought to be that of the suspect and erroneously entered into the forensic database.
In this panel, Dr. Wickenheiser will delve into each of these scenarios and considerations regarding proportionality to solve the crime and maintain public safety, while protecting public trust and privacy rights. Dr. Budowle will also explore how informed consent requirements differ among the different scenarios.
Informed Consent
With technological advances in molecular biology, data mining, and access to metadata in the forensic genomics arena, there are enhanced benefits and risks to consider. One way to convey these benefits and risks is through informed consent. Informed consent is based on fundamental ethical principles that already are accepted when conducting biomedical and behavioral research involving human subjects. If appropriately addressed, informed consent can allow individuals to make decisions voluntarily with autonomy, dignity and respect, while enabling the use of samples for intended proper use(s).
In this panel, Dr. Bruce Budowle will review areas in which informed consent may need to be revisited and/or developed further. This includes reference samples from family members in missing persons or unidentified human remains cases, targeted analysis of an individual(s) during forensic investigative genetic genealogy cases, donors that populate the reference databases used to develop investigative leads, donors who provide their samples for validation studies, population studies and entry into databases that would be applied to forensic statistical calculations, family members who contribute samples or obtain genetic information from a molecular autopsy, and medical and other acquired samples that could be accessed for identification purposes.
Dr. Budowle will address how going forward the informed consent process should be more comprehensive, and risk assessments should be applied to consider the information that should be contained within a form or other means to communicate and assess comprehension of a potential participant.
FIGG Laws
In the United States, there is currently no comprehensive federal law specifically regulating genetic privacy and IGG. In 2019 the Department of Justice issued an interim policy saying that "forensic genetic genealogy" should generally be used only for violent crimes such as murder and rape, as well as to identify human remains. It is unclear if a final policy will be issued. Currently, FIGG laws are regulated at the State level, with vast differences among the States. For example, Maryland and Montana require law enforcement agencies to obtain a warrant or court order before using familial DNA searching in criminal investigations. Other States, such as Florida and Texas, have no specific regulations regarding FIGG.
In recent months, State legislators have put forward new laws aimed at protecting citizens’ genetic privacy. Some of these laws regulate FIGG directly, while others have indirect—and presumably unintentional—effects on FIGG. Some of the laws that directly regulate FIGG create onerous requirements that do not protect genetic privacy, while leaving sensitive areas well-known to FIGG practitioners unregulated. And many of the laws that indirectly affect FIGG effectively ban the method.
Dr. David Gurney will address each of these concerns further and the need for legislators to confer with experts in FIGG to craft effective and targeted legislation around genetic privacy and FIGG.
Public Sentiment
Public opinion around FIGG is complex, reflecting a balance between the potential benefits and risks of the technology. Past studies have demonstrated that individuals are concerned about genetic privacy, yet they are willing to share their genetic data to support activities that they believe are important, such as medical research. However, all of these studies pre-date FIGG, and none probed the public’s attitudes towards law enforcement participation in genealogy databases.
In 2020, our research team obtained funding from the National Human Genome Research Institute to conduct a 4-year study of public preferences related to FIGG for the purpose of informing practice and policy. During this panel, Prof. Christi Guerrini will present findings from a survey our research team is in the process of fielding with 1000 respondents who comprise a representative sample of the U.S. general population. This survey includes direct elicitation items to understand public acceptability of various applications of FIGG and its potential oversight. The survey also includes two experiments intended to understand level of concern with law enforcement use of various kinds of personal information about non-suspects as well as relative preferences for various features of FIGG practice associated with trade-offs between individual interests in privacy and societal interests in public safety and justice. This work builds on our team’s 2018 survey to understand acceptability of FIGG to identify perpetrators and unidentified human remains.
In conclusion, in today’s digital age, its clear investigative genetic genealogy is here to stay. But, there is also a clear need to discuss and understand the benefits and risks involved. We must engage in dialogue to navigate the minefield of ethical and policy issues to ensure this exciting technology is being used in a way that upholds our ideals.
To learn more about this year's ISHI conference, visit our website below.