Since the arrest of the alleged Golden State Killer in April 2018, investigative genetic genealogy (IGG) has helped close at least 59 other cases in the United States, yet there are concerns that this new technique violates the privacy interests of participants in genetic genealogy databases and their families. Some believe that these privacy concerns are so compelling that IGG threatens to undermine public participation in clinical and research genetic databases, especially those maintained by the government. Past studies have demonstrated that although individuals are concerned about genetic privacy, they are willing to share their genetic data with certain individuals and entities for particular purposes. But all of these studies pre-date IGG and none probed participation of law enforcement in genetic genealogy or other recreational genetic databases. In May 2018, we conducted what remains the only published survey to assess public opinion of IGG and found strong support when the purpose is to identify violent criminals. Due to resource constraints, however, the survey was not designed to account for the complex trade-offs that the public makes when assessing the value and acceptability of any use of genetic data. The objective of this research is to measure public preferences regarding police participation in genetic genealogy databases to inform private practices and public policy.
In Aim 1, we will conduct qualitative interviews of law enforcement, forensic scientists, genetic genealogy firms, and genetic genealogists to obtain a technically precise and comprehensive description of IGG practices and procedures and forecasts of its future.
In Aim 2, we will conduct geographically diverse focus groups to identify what the public believes are the most salient attributes of law enforcement participation in genetic genealogy databases and conduct a discrete choice experiment that will measure public preferences based on these attributes.
In Aim 3, we will conduct a modified policy Delphi with expert stakeholders that culminates in recommended best practices for IGG that operationalize the preference findings. This proposal is innovative because it will triangulate insights and data collected using multiple qualitative, quantitative, and experimental methods to inform solutions to a previously unanticipated use of genetic data that is transforming what it means to cooperate in police investigations. The research will have a positive impact by promoting public confidence in sharing genetic data to maximize their individual and social utility, including in clinical care and research.

Public Health Relevance

Investigative genetic genealogy, a technique used by law enforcement to generate leads in criminal cases through searches of genetic genealogy databases, raises important privacy concerns for database participants and their families. This project will measure public preferences related to law enforcement participation in genetic genealogy databases and develop best practices for investigative genetic genealogy that operationalize these preferences by engaging experts and relevant constituencies. The project will have a positive public health impact by promoting public trust in sharing genetic data to maximize its individual and social utility, including in clinical care and research.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Research Project (R01)
Project #
1R01HG011268-01
Application #
10031167
Study Section
Special Emphasis Panel (ZRG1)
Program Officer
Boyer, Joy
Project Start
2020-09-16
Project End
2024-06-30
Budget Start
2020-09-16
Budget End
2021-06-30
Support Year
1
Fiscal Year
2020
Total Cost
Indirect Cost
Name
Baylor College of Medicine
Department
Genetics
Type
Schools of Medicine
DUNS #
051113330
City
Houston
State
TX
Country
United States
Zip Code
77030