Christi Guerrini Lab

As wastewater research and monitoring programs develop and evolve beyond SARS-CoV-2 to a wide range of possible pathogens (viruses, bacteria, and protozoa), one critical challenge is determining what information ought to be shared, with whom, and how.

Wastewater research and monitoring can provide early warning of the spread of known diseases of public health importance and inform public health responses, but it can also provide highly sensitive and potentially stigmatizing information, raising ethical, legal, and social implication (ELSI) considerations, including how to communicate information in a way that maximizes benefits and builds public trust while protecting privacy and avoiding the exacerbation of health inequities. EMPOWER is an innovative embedded ELSI research project that will directly impact the development and implementation of strategies for communicating information from a statewide wastewater research and monitoring program in Texas. This project will collect critical empirical data from stakeholders and engage diverse members of the community to identify and develop strategies to address the ELSI considerations of communicating information from public health research.

The objective of EMPOWER is to develop a strategy for responsible reporting of information from wastewater monitoring in the state of Texas that is feasible and reflects community members’ values and perspectives. We will collaborate with the Texas Epidemic Public Health Institute (TEPHI) Wastewater Consortium (TWC) and its Action Plan Working Group to achieve the following specific aims:

• In Aim 1, we will identify facilitators and barriers to results disclosure by conducting embedded ELSI research (participant observation) and interviews with the TEPHI Action Plan Working Group members and other stakeholders involved in the TWC.
• In Aim 2, we will assess community members’ perspectives about results disclosures by conducting community engagement studios across Texas and a statewide survey.
• In Aim 3, we will generate evidence-based recommendations for results disclosure and develop a communication platform for community members’ review and feedback.

Our overarching goal is to develop ethical guidelines for the dissemination of results from wastewater research and monitoring programs.

Supported by: R01ES036232, Grant funding from National Institutes of Health, National Institute of Environmental Health Science, Office of the Director, National Human Genome Research Institute

Project Personnel

Amy McGuire – mPI

Jennifer Deegan – mPI, UTHealth Houston

Faith Fletcher – Co-I

Christi Guerrini – Co-I

Mary Majumder – Co-I

Rosalia Guerrero – Community health worker, UTHealth Houston

Norah Crossnohere – Consultant, patient-centered outcomes researcher, Ohio State University

Shannon-Claire Barnes, Clinical research associate

Jill Robinson – Research manager

Eric Boerwinkle – Advisory committee chair, UTHealth Houston

Anthony Maresso – Advisory committee member

Cheryl Walker – Advisory committee member

Project Description

After the Golden State Killer: Public Preferences and Policy Implications of Police Use of Genetic Data

In 2018, the arrest of the alleged Golden State Killer made headlines around the world. He was identified using a controversial new technique called investigative genetic genealogy (IGG). This technique involves uploading crime scene DNA to genetic genealogy databases with the intention of identifying a criminal offender’s genetic relatives and, eventually, locating the offender in their family tree. Since 2018, according to one expert, IGG has helped lead to the successful identification of over 1,000 violent criminal suspects.

At the same time, the technique has been challenged by those who argue it violates fundamental privacy interests of database participants 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—including our own—have demonstrated that individuals are concerned about genetic privacy, yet they are willing to share their genetic data with certain individuals, for particular reasons, and under specific conditions. But all of these studies pre-date IGG and none probed participation by law enforcement in genetic genealogy or other recreational genetic databases. Understanding the complex trade-offs that the public makes when assessing the value and acceptability of law enforcement use of genetic data will be important in ensuring that IGG-relevant policies and practices that are adopted strike a balance between safety and privacy that is acceptable to the public.

This project involves:

• Qualitative interviews to characterize and forecast law enforcement participation in genetic genealogy databases.
• Focus groups and a discrete choice experiment to measure preferences related to law enforcement participation in genetic genealogy databases.
• A modified policy Delphi to develop best practices related to law enforcement participation in genetic genealogy databases.

Additional project materials available at: DOI 10.17605/OSF.IO/N9TFU.

Supported by: R01HG011268, National Human Genome Research Institute, NIH, 2020-2024

FORENSEQ is a trademark of Verogen, Inc. and Qiagen, N.V. The ForenSeq Study is not affiliated with the FORENSEQ mark.

Publications

1. Dahlquist, J, Robinson, JO, Daoud, A, Bash-Brooks, W, McGuire, AL, Guerrini, CJ, Fullerton, SM. Public perspectives on investigative genetic genealogy: Findings from a national focus group study. AJOB Empir Bioeth. 2024 1–11. https://doi.org/10.1080/23294515.2024.2336904
2. Guerrini CJ, Wickenheiser RA, Bettinger B, McGuire AL, Fullerton SM. Four misconceptions about investigative genetic genealogy. J Law Biosci. 2021;8(1):lsab001. Published 2021 Apr 13. doi:10.1093/jlb/lsab001
3. Guerrini CJ, Robinson JO, Petersen D, McGuire AL. Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic technique. PLoS Biol. 2018;16(10):e2006906. Published 2018 Oct 2. doi:10.1371/journal.pbio.2006906
4. Ram N, Guerrini CJ, McGuire AL. Genealogy databases and the future of criminal investigation. Science. 2018;360(6393):1078-1079. doi:10.1126/science.aau1083 
5. Guerrini CJ, Bash Brooks W, Robinson JO, Fullerton SM, Zoorob E, McGuire AL. IGG in the trenches: results of an in-depth interview study on the practice, politics, and future of investigative genetic genealogy. Forensic Science International; 2024;356. Published 2024 Mar. https://doi.org/10.1016/j.forsciint.2024.111946.
6. Campmoamor NB, Guerrini CJ, Bash Brooks W, Bridges JFP, Crossnohere NL. Pretesting discrete‑choice experiments: A guide for researchers. Patient.2024;17,109-120. Published 16 Feb 2024. https://doi.org/10.1007/s40271-024-00672-z
7. McGuire AL, Wickenheiser R, Budowle B, Gurney D, Guerrini CJ. Solving crimes while protecting genetic privacy. Forensic Gen; Published 2023 Dec 7. https://doi.org/10.1089/forensic.2023.0015
8. Guerrini CJ, Gurney D, Kramer S, Moore, C, Press M, McGuire AL. State genetic privacy statutes: Good intentions, unintended consequences? Bill of Health; Published 2023 Aug 10. https://blog.petrieflom.law.harvard.edu/2023/08/10/state-genetic-privacy-statutes-good-intentions-unintended-consequences/
9. Guerrini CJ, McGuire, AL. Studying public preferences and policy options for investigative genetic genealogy. ISHI News. Publishes 2021 Nov 09
10. Guerrini CJ, Wickenheiser RA, Bettinger B, McGuire AL, Fullerton SM. Four misconceptions about investigative genetic genealogy. J Law Biosci. 2021;8(1):lsab001. Published 2021 Apr 13. doi:10.1093/jlb/lsab001
11. Guerrini CJ, Robinson JO, Petersen D, McGuire AL. Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic technique. PLoS Biol. 2018;16(10):e2006906. Published 2018 Oct 2. doi:10.1371/journal.pbio.2006906
12. Ram N, Guerrini CJ, McGuire AL. Genealogy databases and the future of criminal investigation. Science. 2018;360(6393):1078-1079. doi:10.1126/science.aau1083

Presentations

2024

1. Christi Guerrini participated in a panel at the National Academies workshop on Law Enforcement use of Probabilistic Genotyping, Forensic DNA Phenotyping, and Forensic Investigative Genetic Genealogy Technologies in Washington DC: "Forensic Investigative Genetic Genealogy: Considerations for Implementation."

2023

1. Whitney Bash Brooks presented at the American Society of Bioethics and Humanities annual meeting in Baltimore, MD: "Public perceptions on law enforcement use of IGG: results from a choice experiment.
2. Amy McGuire and Christi Guerrini participated in an invited panel at the International Symposium on Human Identification annual meeting in Denver, CO: “Solving crimes while protecting genetic privacy.”
3. Whitney Bash Brooks presented two posters at the International Symposium on Human Identification annual meeting in Denver, CO: "Concerns, predictions, and possibilities: a systematic review of ethical issues associated with investigative genetic genealogy" and "Public perspectives on investigative genetic genealogy practices and policies."
4. Sara Huston presented a poster at the International Symposium on Human Identification annual meeting in Denver, CO:"Twitter/X insigths into public perspectives regarding investigative genetic genealogy."
5. Nicola Campoamor presented a poster at the Society for Medical Decision Making annual meeting in Philadelphia, PA: "Pretesting novel discrete-choice instruments: A guide for researchers."
6. Christi Guerrini presented at the Ramapo Investigative Genetic Genealogy Conference in Mahwah, NJ: “IGG from the inside: Practitioner Perspectives on the practice, future, and politics of investigative genetic genealogy.”
7. Whitney Bash-Brooks presented at the Ramapo Investigative Genetic Genealogy Conference in Mahwah, NJ: “ELSI inside the precinct: a systematic review of rthical and regulatory issues with investigative genetic genealogy.”
8. Diana Maden presented at the Ramapo Investigative Genetic Genealogy Conference in Mahwah, NJ: “Insights from social media into public perspectives on investigative genetic genealogy.”
9. Christi Guerrini presented a poster at the American Society of Crime Laboratory Directors Annual Symposium in Austin, TX: "IGG from the inside: practitioner perspectives on the practice, future, and politics of investigative genetic genealogy."

2022

1. Amy McGuire was a presenter in Verogen’s Forensic Investigative Genealogy Master Class webinar: “Public perceptions and Investigative Genetic Genealogy.” 
2. Christi Guerrini presented at the at the American Society for Bioethics and the Humanities annual conference (virtual): “Investigative genetic genealogy from the inside: what is its ethical practice and future?”
3. Stephanie Malia Fullerton, Christi Guerrini, and Amy McGuire participated in a panel at ELSICon (virtual): “Developing an evidence base for investigative genetic genealogy policy making.” 

2021

1. Christi Guerrini presented at The Biology of Genomes conference (virtual): “Law enforcement use of genetic data: old, new, and non controversies."

Supplement Project

IGG on the Internet: Characterizing Public Perspectives on Law Enforcement Use of Genetic Genealogy Data in Social Media

Project Description

Since DeAngelo’s arrest, IGG has aided resolution of hundreds of cases in the United States. The use of IGG has stimulated U.S. public debate about the technique’s ethical acceptability, especially important as more law enforcement use IGG in investigations.

Traditional media websites and social media platforms are a rich repository of these conversations. Specifically, public comments posted to these web platforms can be mined using informatics tools and interpreted using traditional social science methods to reveal features, applications, and consequences of IGG that are associated with public approval and disapproval. These publicly sourced data emerge without intervention or influence by researchers, allowing unique observations.

Project Description

The NIH BRAIN Initiative has been ongoing since 2013. The Initiative “is aimed at revolutionizing our understanding of the human brain” through the “development and application of innovative technologies” to deepen our understandings of how the brain and neural circuits interact in health and disease (The BRAIN Initiative, NIH, 2021).

Data sharing is essential to promote equity and maximize the impact of the significant public investment in the BRAIN Initiative. Data sharing plans are now required for BRAIN funding, but there is an urgent need to develop specific policies and practices that are empirically informed and address ethical challenges and concerns related to sharing human data from BRAIN research. Our own experience and research with investigators conducting BRAIN Initiative studies of closed loop or adaptive deep brain stimulation, for instance, suggests that the practice of sharing data is inconsistent and incomplete, despite broad agreement that it is important. Some ethical challenges relate to privacy, consent, the interoperability of data types and sharing platforms, and competing commercial and processional interests.

The specific objectives of BRAINshare: Sharing Data in BRAIN Initiative Studies are to engage key stakeholders in a deliberative process to identify challenges and concerns specific to sharing human data from the BRAIN Initiative and to generate empirically informed policy and practice options to facilitate responsible sharing of this data.

• In Aim 1, we will use informational interviews and document analysis to identify BRAIN Initiative-specific data-sharing challenges, as well as relevant policy and practice considerations.
• In Aim 2, we will use semi-structured interviews and surveys to evaluate BRAIN Initiative research participants’ attitudes, preferences, and concerns about data sharing and brain privacy.
• In Aim 3, we will employ a modified policy Delphi process with diverse stakeholders to prioritize challenges and generate and evaluate policy and practice options that address high-priority challenges. 

The long-term goals of this research program are to develop, test, and disseminate strategies to improve data sharing in biomedical research associated with human neuroscience. The overall objective of this project is to apply our combined expertise in neuroscience, neuroethics, social science, law, and science policy to identify challenges and concerns and generate empirically informed policy and practice options that facilitate responsible data sharing within the NIH BRAIN Initiative.

Supported by: R01MH126937, Grant funding from BRAIN Initiative - National Institute of Mental Health of the National Institutes of Health

Presentations

Sharing Data: Speedbumps on the Translation Trail. ELSIcon2022: Innovating for a Just and Equitable Future. Cook-Deegan R, Maxson Jones K, Rahimzadeh V, Spector-Bagdady K (2022).

The Montreal Neurological Institute: A case study in “open” neuroscience. The BRAIN Initiative Meeting. Skvarkova Z, Maxson Jones K, Robinson J, McGuire A, Sheth S, Cook-Deegan R (2022).

Paving the Way to a More Interconnected Community of BRAINs. The BRAIN Initiative Meeting. Iyer S, Maxson Jones K, Robinson J, Cook-Deegan R, Guerrini C, Lázaro-Muñoz G, Majumder M, Sheth S, McGuire A (2022).

BRAINshare: Sharing Data in BRAIN Initiative Studies. The BRAIN Initiative Meeting. Maxson Jones K, Robinson J, Cook-Deegan R, Guerrini C, Lázaro-Muñoz G, Majumder M, Sheth S, McGuire A (2022).

Data Sharing Challenges in Academic-Industry Collaborations in the BRAIN Initiative. The BRAIN Initiative Meeting. Noor I, Maxson Jones K, Robinson J, Cook-Deegan R, Guerrini C, Lázaro-Muñoz G, Majumder M, Sheth S, McGuire A (2022).

Publications

Rahimzadeh V, Jones KM, Majumder MA, et al. Benefits of sharing neurophysiology data from the BRAIN Initiative Research Opportunities in Humans Consortium [published online ahead of print, 2023 Nov 3]. Neuron. 2023;S0896-6273(23)00717-1. doi:10.1016/j.neuron.2023.09.029 

Supplement Project

This one-year supplement project aims to conduct a case study on ethical data sharing challenges in autism research and how to address data sharing practices that lack diversity, equity, and inclusion considerations. Data will be collected through a literature review and in-depth interviews with diverse stakeholders to explore challenges and potential solutions to address such ethical and policy challenges in data sharing. This case study will serve as an additional research input that informs the ongoing Delphi process in the BRAINshare Project’s Aim 3 and shapes the Project’s broader policy recommendations.  

Supported by: R01MH126937-03S1, National Institute of Mental Health, NIH, Research Supplement to Promote Diversity in Health-Related Research Program

Project Description

The internet is increasingly providing opportunities for "citizen scientists" to participate in the design and conduct of research outside of traditional scientific institutions. These initiatives are becoming prevalent in the field of genomics, where websites collect genetic sequencing data for research use and portals connect individuals to genomic studies seeking varying levels of involvement, including self-experimentation.

At the same time, these bottom up participant-driven approaches to scientific investigation raise new questions regarding who owns the results and outcomes of this research. The issue of ownership is critically important to the research enterprise because owners of research outputs have rights associated with their disclosure, patenting, commercialization, and licensing. However, it is not yet known how genomic citizen science initiatives are actually addressing these conflicts in practice, or the extent to which those approaches are consistent with the ethical claims, non-property rights, values, and preferences of participants.

This project involves:

• A landscape analysis of existing and emerging U.S.-based citizen science initiatives involving genetic data.
• Semi-structured interviews of genomic citizen science leaders and participants to explore conceptualizations, assumptions, and preferences related to ownership.
• A legal and ethical analysis of citizen scientists' ownership interests in research outputs.

Supported by: DI-2017C2-7726, Patient-Centered Outcomes Research Institute

Publications

Guerrini,CJ,  Contreras, JL, Bash Brooks W, Canfield I, Trejo M, McGuire AL. “Idealists and capitalists”: ownership attitudes and preferences in genomic citizen science, New Genetics and Society, 2022; 41:2, 74-95, DOI: 10.1080/14636778.2022.2063827

Guerrini CJ, Crossnohere NL, Rasmussen L, Bridges JFP. A best–worst scaling experiment to prioritize concern about ethical issues in citizen science reveals heterogeneity on people-level v. data-level issues. Sci. Rep. 2021; 11:19119.

Trejo M, Canfield I, Bash Brooks W, Pearlman A, Guerrini CJ. “A cohort of pirate ships”: biomedical citizen scientists’ attitudes towards ethical oversight. Citiz Sci. 2021; 6:15.

M. Trejo, I. Canfield, J.O. Robinson, C.J. Guerrini. How Biomedical Citizen Scientists Define What They Do: It’s All in the Name, AJOB Empir Bioeth, 2021; 12:1, 63-70. doi: 10.1080/23294515.2020.1825139

Guerrini CJ, Trejo M, Canfield I, McGuire AL. Core values of genomic citizen science: results of an interview study. Biosocieties. 2020; doi:10.1057/s41292-020-00208-2.

Guerrini CJ, Sherkow JS, Meyer MN, Zettler PJ. Self-experimentation, ethics, and regulation of vaccines. Science. 2020; 369(6511):1570-72.

Guerrini,CJ,  Contreras, JL. Credit for and Control of Research Outputs in Genomic Citizen Science, 21 Annu. Rev. Genomics & Hum. Genet.; 2020, 465.

C.J. Guerrini, J.K. Wagner, S.C. Nelson, G.H. Javitt, A.L. McGuire. Who’s on Third?: Regulation of Third-Party Genetic Interpretation Services, 22 Genet. Med. 2020; 4-11.

Guerrini CJ, Lewellyn MJ, Majumder MA, McGuire AL. Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs? BMC Med Ethics, 2019; 20:84.

Guerrini CJ, Spencer GE, Zettler PJ. DIY CRISPR. North Carolina Law Review. 2019; Available at SSRN 3365421

Guerrini CJ, Majumder MA, Lewellyn MJ, McGuire AL. Citizen science, public policy. Science. 2018; 361:134-136.

Guerrini CJ, Robinson JO, Petersen D, McGuire AL. Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic technique. PLoS Biol. 2018; 16:e2006906. doi: 10.1371/journal.pbio.2006906

Ram N, Guerrini CJ, McGuire AL. Incidental informants: genealogy databases and the future of criminal investigation. Science. 2018; 360:1078-1079.

Presentations

"Management of Claims to Research Outputs in Genomic Citizen Science: Practices and Perspectives," NIH Citizen Science Working Group (webinar format) (Apr. 2019).

"DIY Genomics," Baylor College of Medicine Health & Science Policy Research Day (Houston, TX, Mar. 2019).

"Ownership in Citizen Science," Baylor College of Medicine Health & Science Policy Research Day (Houston, TX, Mar. 2019)

"DIY CRISPR," North Carolina Law Review Annual Symposium (Chapel Hill, NC, Oct. 2018).

"How is Genomic Citizen Science Managing Interests in Research Outcomes?," American Society for Bioethics and Humanities Annual Meeting (Anaheim, CA, Oct. 2018).

"IP Policies in Genomic Citizen Science," National Human Genome Research Institute Annual Training Meeting (Los Angeles, CA, Mar. 2018).

"The Ethics of Ownership in Citizen Science," American Society for Bioethics and Humanities Annual Meeting (Kansas City, MO, Oct. 2017).

"Citizen Science: Definition and Landscape," Addressing ELSI Issues in Unregulated Health Research Using Mobile Devices (San Diego, CA, Oct. 2017).