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Article ; Online: Science and its stakeholders

Guerrini, Christi J

2023 Volume 379, Issue 6633, Page(s) 650

Abstract: Patients' families became research partners in a quest to understand a rare genetic disease. ...

Abstract	Patients' families became research partners in a quest to understand a rare genetic disease.
Language	English
Publishing date	2023-02-16
Publishing country	United States
Document type	Journal Article
ZDB-ID	128410-1
ISSN	1095-9203 ; 0036-8075
ISSN (online)	1095-9203
ISSN	0036-8075
DOI	10.1126/science.adg5240
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Article ; Online: A consequentialist ethical analysis of federal funding of elective abortions.

Gleeson, Emile I / Guerrini, Christi J

Bioethics

2021 Volume 35, Issue 4, Page(s) 331–336

Abstract: Insurance coverage of abortion varies widely across the United States and is an extensively debated issue. Medicaid coverage of abortion is particularly relevant because the majority of abortion patients are poor or low-income and are thus often covered ... ...

Abstract	Insurance coverage of abortion varies widely across the United States and is an extensively debated issue. Medicaid coverage of abortion is particularly relevant because the majority of abortion patients are poor or low-income and are thus often covered by Medicaid. Since the Hyde Amendment was first passed in 1976, federal Medicaid funds have been banned from covering the costs of elective abortion. Although states are allowed to use their own funds to cover abortions for their Medicaid recipients, only 17 states currently do so. Of these 17 states, only five cover abortion costs voluntarily; the others do so pursuant to court order. The medical literature includes few ethical analyses of the Hyde Amendment's ban on Medicaid funding of elective abortions. To fill this gap, we perform an ethical analysis of federal policy to fund elective abortions using a consequentialist approach focused on consequences for pregnant women and their children.
MeSH term(s)	Abortion, Induced ; Child ; Ethical Analysis ; Federal Government ; Female ; Financial Management ; Financing, Government ; Humans ; Medicaid ; Poverty ; Pregnancy ; United States
Language	English
Publishing date	2021-02-16
Publishing country	England
Document type	Journal Article
ZDB-ID	632984-6
ISSN	1467-8519 ; 0269-9702
ISSN (online)	1467-8519
ISSN	0269-9702
DOI	10.1111/bioe.12833
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Article ; Online: Credit for and Control of Research Outputs in Genomic Citizen Science.

Guerrini, Christi J / Contreras, Jorge L

Annual review of genomics and human genetics

2021 Volume 21, Page(s) 465–489

Abstract: Citizen science encompasses activities with scientific objectives in which members of the public participate as more than passive research subjects from whom personal data or biospecimens are collected and analyzed by others. Citizen science is ... ...

Abstract	Citizen science encompasses activities with scientific objectives in which members of the public participate as more than passive research subjects from whom personal data or biospecimens are collected and analyzed by others. Citizen science is increasingly common in the biomedical sciences, including the fields of genetics and human genomics. Genomic citizen science initiatives are diverse and involve citizen scientists in collecting genetic data, solving genetic puzzles, and conducting experiments in community laboratories. At the same time that genomic citizen science is presenting new opportunities for individuals to participate in scientific discovery, it is also challenging norms regarding the manner in which scientific research outputs are managed. In this review, we present a typology of genomic citizen science initiatives, describe ethical and legal foundations for recognizing genomic citizen scientists' claims of credit for and control of research outputs, and detail how such claims are or might be addressed in practice across a variety of initiatives.
MeSH term(s)	Biomedical Research/ethics ; Citizen Science/organization & administration ; Community Participation/methods ; Genomics/ethics ; Humans ; Public Opinion
Language	English
Publishing date	2021-02-25
Publishing country	United States
Document type	Journal Article ; Research Support, N.I.H., Extramural ; Review
ZDB-ID	2037670-4
ISSN	1545-293X ; 1527-8204
ISSN (online)	1545-293X
ISSN	1527-8204
DOI	10.1146/annurev-genom-083117-021812
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Article ; Online: Law enforcement use of genetic genealogy databases in criminal investigations: Nomenclature, definition and scope.

Tuazon, Oliver M / Wickenheiser, Ray A / Ansell, Ricky / Guerrini, Christi J / Zwenne, Gerrit-Jan / Custers, Bart

Forensic science international. Synergy

2024 Volume 8, Page(s) 100460

Abstract: Although law enforcement use of commercial genetic genealogy databases has gained prominence since the arrest of the Golden State Killer in 2018, and it has been used in hundreds of cases in the United States and more recently in Europe and Australia, it ...

Abstract	Although law enforcement use of commercial genetic genealogy databases has gained prominence since the arrest of the Golden State Killer in 2018, and it has been used in hundreds of cases in the United States and more recently in Europe and Australia, it does not have a standard nomenclature and scope. We analyzed the more common terms currently being used and propose a common nomenclature: investigative forensic genetic genealogy (iFGG). We define iFGG as the use by law enforcement of genetic genealogy combined with traditional genealogy to generate suspect investigational leads from forensic samples in criminal investigations. We describe iFGG as a proper subset of forensic genetic genealogy, that is, FGG as applied by law enforcement to criminal investigations; hence, investigative FGG or iFGG. We delineate its steps, compare and contrast it with other investigative techniques involving genetic evidence, and contextualize its use within criminal investigations. This characterization is a critical input to future studies regarding the legal status of iFGG and its implications on the right to genetic privacy.
Language	English
Publishing date	2024-02-08
Publishing country	Netherlands
Document type	Journal Article
ISSN	2589-871X
ISSN (online)	2589-871X
DOI	10.1016/j.fsisyn.2024.100460
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Article ; Online: Pretesting Discrete-Choice Experiments: A Guide for Researchers.

Campoamor, Nicola B / Guerrini, Christi J / Brooks, Whitney Bash / Bridges, John F P / Crossnohere, Norah L

The patient

2024 Volume 17, Issue 2, Page(s) 109–120

Abstract: Discrete-choice experiments (DCEs) are a frequently used method to explore the preferences of patients and other decision-makers in health. Pretesting is an essential stage in the design of a high-quality choice experiment and involves engaging with ... ...

Abstract	Discrete-choice experiments (DCEs) are a frequently used method to explore the preferences of patients and other decision-makers in health. Pretesting is an essential stage in the design of a high-quality choice experiment and involves engaging with representatives of the target population to improve the readability, presentation, and structure of the preference instrument. The goal of pretesting in DCEs is to improve the validity, reliability, and relevance of the survey, while decreasing sources of bias, burden, and error associated with preference elicitation, data collection, and interpretation of the data. Despite its value to inform DCE design, pretesting lacks documented good practices or clearly reported applied examples. The purpose of this paper is: (1) to define pretesting and describe the pretesting process specifically in the context of a DCE, (2) to present a practical guide and pretesting interview discussion template for researchers looking to conduct a rigorous pretest of a DCE, and (3) to provide an illustrative example of how these resources were operationalized to inform the design of a complex DCE aimed at eliciting tradeoffs between personal privacy and societal benefit in the context of a police method known as investigative genetic genealogy (IGG).
MeSH term(s)	Humans ; Choice Behavior ; Reproducibility of Results ; Patient Preference ; Surveys and Questionnaires
Language	English
Publishing date	2024-02-16
Publishing country	New Zealand
Document type	Journal Article
ZDB-ID	2466680-4
ISSN	1178-1661 ; 1178-1653
ISSN (online)	1178-1661
ISSN	1178-1653
DOI	10.1007/s40271-024-00672-z
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Article ; Online: An Ethics Framework for Evaluating Ownership Practices in Biomedical Citizen Science.

Guerrini, Christi J / McGuire, Amy L

Citizen science : theory and practice

2022 Volume 7, Issue 1

Abstract: The collaborative nature of citizen science raises important questions about managing ownership of its research outputs. Potential citizen science research outputs include data sets, findings, publications, and discoveries of new ideas, methods, products, ...

Abstract	The collaborative nature of citizen science raises important questions about managing ownership of its research outputs. Potential citizen science research outputs include data sets, findings, publications, and discoveries of new ideas, methods, products, and technologies. Unlike citizen science projects conducted in other disciplines, biomedical citizen science projects often include features, such as contribution of personal health data, that might heighten citizen scientists' expectations that they will be able to access, control, or share in the benefits of project outputs. Here, we refer to moral claims of access, control, and benefit as ownership claims, and a project's management of ownership claims as its ownership practices. Ethical management of ownership is widely recognized as an important consideration for citizen science projects, and practitioners and scholars have described helpful recommendations for preempting issues and engaging stakeholders on practices. Building on this literature, we propose a framework to help biomedical citizen science projects systematically evaluate the ethical soundness of their ownership practices based on four considerations: reciprocal treatment, relative treatment, risk-benefit assessment, and reasonable expectations.
Language	English
Publishing date	2022-12-15
Publishing country	England
Document type	Journal Article
ISSN	2057-4991
ISSN (online)	2057-4991
DOI	10.5334/cstp.537
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Article ; Online: Pirate Talk: Navigating Practical, Ethical, and Legal Issues Associated with Biomedical Citizen Science Interview Studies.

Guerrini, Christi J / Brooks, Whitney Bash / McCurdy, Sheryl A

Citizen science : theory and practice

2022 Volume 7, Issue 1

Abstract: In citizen science, in-depth interviews have advanced the understanding of project leaders' and citizen scientists' objectives, motivations, attitudes, and concerns. The issues encountered by researchers conducting in-depth interviews in citizen science ... ...

Abstract	In citizen science, in-depth interviews have advanced the understanding of project leaders' and citizen scientists' objectives, motivations, attitudes, and concerns. The issues encountered by researchers conducting in-depth interviews in citizen science are likely not unique to this field. However, these issues can surface and play out in distinct ways that depend on the scientific and sociopolitical circumstances of citizen science communities and projects. Researchers' experiences conducting in-depth interviews are the subject of a growing literature that describes considerations for conducting research with discrete populations. We aim to contribute to this literature by describing salient practical, ethical, and legal issues to consider when interviewing biomedical citizen scientists, with a focus on bottom-up biomedical citizen scientists who have loose or no affiliations with traditional scientific institutions. These issues concern how to define the interview population; earn trust and demonstrate trustworthiness given past treatment of bottom-up biomedical citizen scientists by traditional researchers and institutions; adapt research practices to the strong culture of openness that characterizes bottom-up biomedical citizen science; and manage potential safety concerns. This essay draws on our own experiences and those of other qualitative researchers and makes suggestions for addressing these issues in ways intended to protect study integrity and demonstrate respect for participants. We also identify questions that would benefit from broad input and continued study. Our objectives in sharing these lessons learned are to support future research and to improve understanding of this exciting participatory space.
Language	English
Publishing date	2022-12-15
Publishing country	England
Document type	Journal Article
ISSN	2057-4991
ISSN (online)	2057-4991
DOI	10.5334/cstp.529
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Article ; Online: Public Perspectives on Investigative Genetic Genealogy: Findings from a National Focus Group Study.

Dahlquist, Jacklyn / Robinson, Jill O / Daoud, Amira / Bash-Brooks, Whitney / McGuire, Amy L / Guerrini, Christi J / Fullerton, Stephanie M

AJOB empirical bioethics

2024 , Page(s) 1–11

Abstract: Background: Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic ... ...

Abstract	Background: Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes. Methods: We conducted eight focus groups with members of the public ( Results: Participants were supportive of IGG in most scenarios, especially for cold and violent cases. The favorable attitudes toward IGG were, however, tempered by distrust of law enforcement among some participants. All participants agreed that databases must inform users if IGG is allowed, but they did not agree on how individual database users should be allowed to opt out or whether to notify them if their data are involved in specific investigations. All participants agreed that IGG should be subject to some prescriptive guidelines, regulations, or accountability mechanisms. Conclusions: These findings suggest broad public support for IGG, and interest in developing systems of accountability for its practice. Our study provides useful insight for policy makers, genomic database stewards, law enforcement, and other stakeholders in IGG's practice, and suggests multiple directions for future research.
Language	English
Publishing date	2024-04-08
Publishing country	United States
Document type	Journal Article
ZDB-ID	2763190-4
ISSN	2329-4523 ; 2329-4515
ISSN (online)	2329-4523
ISSN	2329-4515
DOI	10.1080/23294515.2024.2336904
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Article ; Online: IGG in the trenches: Results of an in-depth interview study on the practice, politics, and future of investigative genetic genealogy.

Guerrini, Christi J / Bash Brooks, Whitney / Robinson, Jill O / Fullerton, Stephanie M / Zoorob, Emily / McGuire, Amy L

Forensic science international

2024 Volume 356, Page(s) 111946

Abstract: Investigative genetic genealogy (IGG) is a new technique for identifying criminal suspects and unidentified deceased and living persons that has sparked controversy. In a criminal case, the technique involves uploading genetic information left by a ... ...

Abstract	Investigative genetic genealogy (IGG) is a new technique for identifying criminal suspects and unidentified deceased and living persons that has sparked controversy. In a criminal case, the technique involves uploading genetic information left by a putative perpetrator at the crime scene to one or more direct-to-consumer genetic genealogy databases with the intention of identifying the perpetrator's genetic relatives and, eventually, locating the perpetrator on the family tree. In 2018, IGG helped to identify the Golden State Killer, and it has since been used in hundreds of investigations in the United States. Here, we report findings from in-depth interviews with 24 U.S.-based individuals involved in IGG that are relevant to the technique's current practice and predicted future. Key findings include: an emphasis on restricting IGG as a conceptual and technical matter to lead generation; the rapid growth of a private and largely self-regulating industry to support IGG; general recognition of three categories of cases associated with distinct practical, ethical, and policy questions, as well as varying degrees of controversy; and the significant influence of perceived public opinion on IGG practice. The experiences and perspectives of individuals in the IGG trenches related to these and other issues are potentially useful inputs to ongoing efforts to regulate the technique.
MeSH term(s)	Humans ; United States ; Genetic Privacy ; Pedigree ; Politics ; Qualitative Research ; Immunoglobulin G
Chemical Substances	Immunoglobulin G
Language	English
Publishing date	2024-02-01
Publishing country	Ireland
Document type	Journal Article
ZDB-ID	424042-x
ISSN	1872-6283 ; 0379-0738
ISSN (online)	1872-6283
ISSN	0379-0738
DOI	10.1016/j.forsciint.2024.111946
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Article ; Online: Clinically Indicated Genomic Sequencing of Children in Foster Care: Legal and Ethical Issues.

Smith, Hadley Stevens / Bonkowski, Emily S / Hickingbotham, Madison R / Pereira, Stacey / May, Thomas / Guerrini, Christi J

The Journal of pediatrics

2023 Volume 262, Page(s) 113612

Abstract: There are approximately 400 000 children in foster care in the US, approximately one-half of whom have chronic health problems and approximately 10% of whom have complex healthcare needs. Given the increasing relevance of genomic sequencing to guide ... ...

Abstract	There are approximately 400 000 children in foster care in the US, approximately one-half of whom have chronic health problems and approximately 10% of whom have complex healthcare needs. Given the increasing relevance of genomic sequencing to guide clinical care for children with rare, chronic, and undiagnosed conditions, it may be an important component of diagnostic evaluation for children in foster care. Clinically indicated genomic sequencing may provide information that has health implications for children in foster care, as well as for their biological parents and other relatives. Whether and how genomic sequencing results impact legal decision making and family court outcomes is not yet well-understood. We describe scenarios that highlight legal, ethical, and policy issues surrounding genomic sequencing for children in foster care using 3 cases adapted from real-world events. Together, these cases highlight important yet underexplored issues that arise when genomic information has legal relevance in family court and ethical implications for child and family well-being. As genomic sequencing becomes more routine for the general pediatric population, additional research is needed to better understand its impacts on children and other stakeholders within the foster care system.
MeSH term(s)	Child ; Humans ; Parents ; Foster Home Care ; Genomics
Language	English
Publishing date	2023-07-17
Publishing country	United States
Document type	Journal Article ; Research Support, N.I.H., Extramural
ZDB-ID	3102-1
ISSN	1097-6833 ; 0022-3476
ISSN (online)	1097-6833
ISSN	0022-3476
DOI	10.1016/j.jpeds.2023.113612
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