Ethical, Legal, And Social Implications Research Articles

Ethics dumping in artificial intelligence

Artificial Intelligence (AI) systems encode not just statistical models and complex algorithms designed to process and analyze data, but also significant normative baggage. This ethical dimension, derived from the underlying code and training data, shapes the recommendations given, behaviors exhibited, and perceptions had by AI. These factors influence how AI is regulated, used, misused, and impacts end-users. The multifaceted nature of AI’s influence has sparked extensive discussions across disciplines like Science and Technology Studies (STS), Ethical, Legal and Social Implications (ELSI) studies, public policy analysis, and responsible innovation—underscoring the need to examine AI’s ethical ramifications. While the initial wave of AI ethics focused on articulating principles and guidelines, recent scholarship increasingly emphasizes the practical implementation of ethical principles, regulatory oversight, and mitigating unforeseen negative consequences. Drawing from the concept of “ethics dumping” in research ethics, this paper argues that practices surrounding AI development and deployment can, unduly and in a very concerning way, offload ethical responsibilities from developers and regulators to ill-equipped users and host environments. Four key trends illustrating such ethics dumping are identified: (1) AI developers embedding ethics through coded value assumptions, (2) AI ethics guidelines promoting broad or unactionable principles disconnected from local contexts, (3) institutions implementing AI systems without evaluating ethical implications, and (4) decision-makers enacting ethical governance frameworks disconnected from practice. Mitigating AI ethics dumping requires empowering users, fostering stakeholder engagement in norm-setting, harmonizing ethical guidelines while allowing flexibility for local variation, and establishing clear accountability mechanisms across the AI ecosystem.

Ethical, Legal and Social Implications (ELSI) Regarding Forensic Genetic Investigations (FGIs)

Ethical, Legal and Social Implications (ELSI) Regarding Forensic Genetic Investigations (FGIs)

AI-readiness for Biomedical Data: Bridge2AI Recommendations.

Biomedical research and clinical practice are in the midst of a transition toward significantly increased use of artificial intelligence (AI) and machine learning (ML) methods. These advances promise to enable qualitatively deeper insight into complex challenges formerly beyond the reach of analytic methods and human intuition while placing increased demands on ethical and explainable artificial intelligence (XAI), given the opaque nature of many deep learning methods. The U.S. National Institutes of Health (NIH) has initiated a significant research and development program, Bridge2AI, aimed at producing new "flagship" datasets designed to support AI/ML analysis of complex biomedical challenges, elucidate best practices, develop tools and standards in AI/ML data science, and disseminate these datasets, tools, and methods broadly to the biomedical community. An essential set of concepts to be developed and disseminated in this program along with the data and tools produced are criteria for AI-readiness of data, including critical considerations for XAI and ethical, legal, and social implications (ELSI) of AI technologies. NIH Bridge to Artificial Intelligence (Bridge2AI) Standards Working Group members prepared this article to present methods for assessing the AI-readiness of biomedical data and the data standards perspectives and criteria we have developed throughout this program. While the field is rapidly evolving, these criteria are foundational for scientific rigor and the ethical design and application of biomedical AI methods.

A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicine

ABSTRACT Calls to identify, explore, and address ethical and social issues as part of the design and implementation of scientific research are now widespread. One way of doing so is through an embedded approach, where ethical, legal, and social implications (ELSI) researchers are situated within larger scientific research studies. We trace the emergence of the ‘embedded ELSI’ approach to integration alongside the development of genomic medicine. In particular, we conduct a conjunctural analysis that draws attention to contests and struggles over the forms and meanings of good science – in this case, genomics – and the role(s) of ELSI scholars and researchers in producing good science. We demonstrate that the embedded ELSI approach emerged from these contests, which left ELSI research and interventions constrained – institutionally, topically, and methodologically. We end by calling for an opening up of embedded approaches to integration so that they might better meet calls for justice and equity in the present conjuncture.

Ethical, Legal, and Social Implications of Gene-Environment Interaction Research.

Many complex disorders are impacted by the interplay of genetic and environmental factors. In gene-environment interactions (GxE), an individual's genetic and epigenetic makeup impacts the response to environmental exposures. Understanding GxE can impact health at the individual, community, and population levels. The rapid expansion of GxE research in biomedical studies for complex diseases raises many unique ethical, legal, and social implications (ELSIs) that have not been extensively explored and addressed. This review article builds on discussions originating from a workshop held by the National Institute of Environmental Health Sciences (NIEHS) and the National Human Genome Research Institute (NHGRI) in January 2022, entitled: "Ethical, Legal, and Social Implications of Gene-Environment Interaction Research." We expand upon multiple key themes to inform broad recommendations and general guidance for addressing some of the most unique and challenging ELSI in GxE research. Key takeaways include strategies and approaches for establishing sustainable community partnerships, incorporating social determinants of health and environmental justice considerations into GxE research, effectively communicating and translating GxE findings, and addressing privacy and discrimination concerns in all GxE research going forward. Additional guidelines, resources, approaches, training, and capacity building are required to further support innovative GxE research and multidisciplinary GxE research teams.

디지털 헬스케어에 관한 국내 ELSI(Ethical, Legal, and Social Implications) 연구경향: 인문학, 법학, 사회과학 연구의 성과와 과제

Digital healthcare, which provides medical services using information and communication technology (ICT), is emerging as a new paradigm, replacing traditional methods of healthcare. This study investigates research trends in digital healthcare through an analysis of studies published in South Korea on the ethical, legal, and social implications (ELSI) of digital healthcare. To this end, a total of 471 articles drawn from Korean academic journals in the humanities, law, and social sciences, were selected as research subjects, and the current status, characteristics, and research tasks were identified. The results show that Korean ELSI research on digital healthcare emerged about 20 years ago and has steadily increased, with in-depth analyses of various sub-topics such as telemedicine, big data, artificial intelligence, wearable devices, and digital therapeutics. Additionally, notable differences were found among studies in the three fields examined concerning research purposes, methods, and major findings. This study comprehensively reviews the research outcomes of studies in each academic field and proposes future tasks for ELSI research.

Supporting Stewardship: Funding, Utilization, and Sustainability as Ethical Concerns in Networked Biobanking

Background The literature on the ethics of biobanking often overlooks the practical operations of biobanks. The ethics of stewardship requires that biobank resources are used to conduct beneficial science. Networked biobanks have emerged to increase the scientific benefit of biobank resources, but little is known about whether and how operations of networking may accomplish this goal. Methods As part of a larger study on the ethical, legal, and social implications (ELSI) of networked biobanking, we conducted 38 interviews with representatives of 31 networked biobanks. Interviews explored operations of the networks. We used thematic analysis to examine how respondents describe three topics associated with stewarding biobank resources—funding, utilization, and sustainability. Results Our results highlight that funding, utilization, and sustainability are critical not only to the operation of biobanks, but also to the ethical obligations that biobankers owe to stakeholders to steward the resources. Based on prior research, we hypothesized that respondents would describe networking as beneficial to increasing funding, utilization, and sustainability of the network. Respondents generally found value in networked biobanking, but networking did not necessarily increase funding, utilization, and sustainability. Conclusion The results presented here support inclusion of funding, utilization, and sustainability as topics of ethical concern in the practice of biobanking and networked biobanking. These issues are rooted in the stewardship obligations that biobankers feel to their partners, client investigators, and participants. The goal of promoting stewardship through networking requires significant time and effort to build governance models that honor the obligations of each individual biobank to their donors and advance the collective goals of the network. We conclude with suggestions offered by respondents to address improving these aspects of stewardship.

Mapping Ethical, Legal, and Social Implications (ELSI) of gamete donation.

This scoping review investigates the Ethical, Legal, and Social Implications (ELSI) of gamete donation, a critical facet of Assisted Reproductive Technologies, by analyzing the evolving research scope, methodological approaches, and the geographical skew in the literature. Despite the increased global uptake of donor gametes, current scholarship predominantly emanates from Western contexts and focuses on majoritized groups. This bias constrains the universality of research findings and limits their applicability across varied legal, cultural, and social contexts, underscoring a need for broader inclusivity. We addressed 867 pivotal articles published between 1999 and 2019. Our analysis reveals a discernible escalation in research volume, with 62% based on empirical research. The intellectual landscape unfolds into four dominant clusters: Regulatory Frameworks, Incentives, and Access; Family Dynamics and Genetic Linkages; Identity and Privacy in Donor Conception; and Cultural and Societal Attitudes towards GD. Each cluster highlights nuanced dimensions of gamete donation, from regulatory intricacies and psychological welfare to identity ethics and cultural perceptions. Our findings advocate for a shift towards more globally representative and methodologically inclusive research. By integrating diverse cultural narratives and expanding geographical breadth, future research can offer holistic understandings of gamete donation, fostering equitable and culturally resonant practices and policies worldwide.

Applying an ELSI lens to real-world data and novel genomic insights for personalized mental healthcare.

Improving the understanding of the complex relationship between genetic predispositions, environmental influences, and sociocultural factors in the development and progression of mental illness is crucial for optimizing treatment efficacy and addressing longstanding health disparities. This paper discusses the ethical, legal, and social implications (ELSI) of recent advancements in biomedical research, particularly in genome-wide association studies (GWAS), phenome-wide association studies (PheWAS), and genome-wide environment interaction studies (GWEIS). Despite recent scientific progresses, challenges such as inadequate study methodology (e.g., correlational studies) and lack of diversity within study samples persist. Recent discoveries of several genetic variants of diseases, could augment and improve, or even challenge, existing understanding of the onset and management of mental illness. Leveraging real-world data (RWD), including electronic health record data (EHRs) focused on social determinant of health alongside biobank data, offers further opportunities to enhance the understanding of gene-environment interactions and inform efforts for reducing disparities in mental healthcare. Increased knowledge can support timely, holistic, evidence-based, and personalized care. Addressing ELSI considerations and maximizing the use of RWD is essential for advancing ethical and inclusive psychiatric genetics research, ultimately improving patient outcomes and promoting equitable access to evidence-based treatments.

Mapping ethical, legal, and social implications (ELSI) of fertility preservation.

The study examines the ethical, legal, and social implications of fertility preservation, highlighting its importance across oncofertility, elective egg freezing, and posthumous assisted reproduction, as well as its impact on transgender individuals undergoing gender-affirming surgeries. A comprehensive analysis of 600 articles, focusing on a diverse range of disciplines, including bioethics, psychology, and sociology, to explore public and healthcare professionals' knowledge, patient experiences, and regulatory constraints. The body of literature is growing, indicating increasing recognition of FP's significance. Key themes included the centrality of counseling and informed decision-making, especially in oncofertility and EEF, and ethical debates surrounding informed consent and the autonomy of involved individuals. The analysis underscored a western-centric bias in current research, emphasizing the need for more inclusive and culturally sensitive studies. The study calls for a nuanced understanding of FP, advocating for policies that consider ethical, cultural, and social dimensions. It suggests the necessity for interdisciplinary research to address identified gaps, particularly in understanding non-Western perspectives and ensuring equitable access to FP services globally. Moreover, the review emphasizes the importance of integrating patient-centric approaches and ethical frameworks to guide FP practices and policies, ensuring they respect diverse values and meet individuals' needs.

ELSI-Forschende für technische Innovationen in der Pflege: Perspektiven zwischen kritischer Distanz und anwendungsbezogener Einflussnahme

This article presents the results of a self-reflective analysis of the role of research on ethical, legal, and social implications (ELSI) in projects that aim to develop and implement technology solutions for care. Four perspectives of ELSI research are used to examine their significance for this endeavor: (1) ELSI research as a ‘contribution to promoting acceptance,’ (2) ELSI research as a ‘seal of approval for new technologies,’ (3) ELSI research as ‘distanced-critical observation,’ (4) ELSI research as a ‘component of integrated research’. It becomes clear that these perspectives differ according to how they cope with the tension between the demands of a scientifically sound self-image and the fulfillment of practical and normative requirements of the field of investigation. Insights into these differences provide clues for the design of ELSI research that can self-critically reflect on its mediating role in the transfer of knowledge between technology development and technology use.

Missed opportunities for AI governance: lessons from ELS programs in genomics, nanotechnology, and RRI

AbstractSince the beginning of the current hype around Artificial Intelligence (AI), governments, research institutions, and the industry invited ethical, legal, and social sciences (ELS) scholars to research AI’s societal challenges from various disciplinary viewpoints and perspectives. This approach builds upon the tradition of supporting research on the societal aspects of emerging sciences and technologies, which started with the Ethical, Legal, and Social Implications (ELSI) Program in the Human Genome Project (HGP) in the early 1990s. However, although a diverse ELS research community has formed since then, AI’s societal challenges came to be mostly understood under the narrow framing of ethics and disconnected from the insights and experiences of past ELS research. In this article, we make up for this gap and connect insights from past ELS researchers with current approaches to research the societal challenges of AI. We analyse and summarize the history of “ELS programs” (programs that emerged since the HGP to support ELS research in a given domain) as three distinct eras: a genomics era, a nano era, and an RRI era. Each of these eras comprises several achievements and challenges relevant to ELS programs in AI research, such as the setup of independent funding bodies, the engagement of the wider public in research practice, and the increasing importance of private actors. Based on these insights, we argue that AI research currently falls back on self-regulatory, less participatory, and industry-led approaches that trouble ELS programs’ past achievements and hinder opportunities to overcome the still-existing challenges.

Ethische, rechtliche und soziale Aspekte (ELSA) der Gestaltung von KI-Systemen: Systematisierung der Betrachtung durch Vorgehensmodelle und Leitfäden

ZusammenfassungWesentliche Erfolgsfaktoren für die rechtlich angemessene und menschengerechte Nutzung von Künstlicher Intelligenz (KI) basieren auf der breiten Reflexion rechtlicher, ethischer und sozialer Aspekte (ELSA) im Rahmen organisatorischen Prozesse in Unternehmen und Institutionen. Künftig bedarf es aufgrund der Vielzahl zu erwartender KI-Vorhaben einer systematischen Betrachtung. Eine Möglichkeit dies zu Verankern sind Vorgehensmodelle inkl. Eines entsprechenden Referenzprozessmodells. Eine Ergänzung stellen Leitfäden dar. Ausgewählte Aspekte werden hierbei seit einigen Jahren in interdisziplinären und transdisziplinären Forschungsprojekten intensiv diskutiert und angewandt. Der folgende Beitrag ist im Rahmen des KARL-Projekt entstanden und erörtert relevante Bezugspunkte im Rahmen der Implementierung von KI in zukünftige Arbeitsumgebungen. Vor diesem Hintergrund wird die Frage bearbeitet, welche Herausforderungen Informatiker/-innen im Gestaltungsprozess selbst adressieren können und zu welchen Fragen weitere Akteur/-innen (Rechtswissenschaftler/-innen, Ethik-Expert/-innen sowie Expert/-innen der sozialen Technikgestaltung) einbezogen werden sollten. Insgesamt plädieren die Autor/-innen für einen prozessorientierten Ansatz, in dem unterschiedliche Aspekte der Technikgestaltung systematisch berücksichtigt werden.Praktische Relevanz Die Arbeitswissenschaft wird zunehmend mit Fragestellungen der Integration von KI in verschiedene Arbeitsprozesse konfrontiert. Die Betrachtung von ELSA ist eine Teilaufgabe in der Gestaltung und Reflektion dieser Entwicklung.

Understanding the Gap: A Cross-Sectional Survey of ELSI Scholars’ Dissemination Practices and Translation Goals

Background Researchers engaged in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics are often publicly funded and intend their work to be in the public interest. These features of U.S. ELSI research create an imperative for these scholars to demonstrate the public utility of their work and the expectation that they engage in research that has potential to inform policy or practice outcomes. In support of the fulfillment of this “translational mandate,” the Center for ELSI Resources and Analysis (CERA), funded by the National Human Genome Research Institute (NHGRI), aims to facilitate community-informed, ELSI research results synthesis and dissemination. However, little is known about how ELSI research scholars define the goals of translation and imagine the intended users of their research findings. Methodology We distributed a Qualtrics survey to ELSI scholars that aimed to determine: (1) researchers’ expectations for their research findings in relation to policy or practice outcomes, (2) the stakeholder groups researchers believe could benefit from their research findings, and (3) the methods researchers use to foster the uptake of their findings by those stakeholders. Results Most ELSI researchers surveyed thought there were stakeholders that could benefit from their research findings, including health care professionals, at-risk individuals, patients, and their family members, policy-makers, and researchers/scientists, and expected their research findings to inform the creation or revision of laws, policies, or practice guidelines. Most researchers planned to disseminate findings directly to relevant stakeholders, with fewer expecting dissemination support from research funders, universities, or other entities. Conclusion The broad range of research topics, disciplines, and set of potential end users represented in ELSI reseach complicate the work of a knowledge broker. Nonetheless, the CERA can play an important role in disseminating ELSI results to relevant stakeholders. Further research should explore outreach mechanisms.

Developing a community-led rare disease ELSI research agenda.

Research priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease. This two-year project utilized a community-centered approach to engage rare disease community members as equal partners in developing a research agenda for ELSI in rare disease. We established "Rare Voices" (RV), a 22-member stakeholder group of patients, parents, clinicians and researchers. Following capacity-building trainings, RV designed and conducted listening sessions with teen patients and parents of children with rare diseases to explore challenges, positive experiences, and ethical concerns. Listening session findings were synthesized and contextualized into research topics, which RV members further refined and prioritized. We used established measures to assess RV member engagement and satisfaction. From 14 listening sessions with parents (n = 52) and teen patients (n = 13), RV identified eight core research topics as most important for future rare disease research: coordinating care, communication, accessing resources and care, impact on family unit, community and support in society, mental health and identity, ethical aspects of care, and uncertainty. RV members were highly engaged throughout the two-year project and reported high levels of satisfaction with the experience and research agenda. Through capacity-building and authentic engagement, this project resulted in a community-led rare disease research agenda to guide future rare disease ELSI research that aligns with patients' and families' priorities. An environment of equal partnership and respect created a space for mutual learning where community members were empowered to shape the research agenda based on their collective experiences. The agenda recognizes the shared psychosocial and healthcare experiences of rare disease and offers practical areas of research to address patient and family needs.

Techniques, procedures, and applications in host genetic analysis.

This chapter overviews genetic techniques' fundamentals and methodological features, including different approaches, analyses, and applications that have contributed to advancing health and disease. The aim is to describe laboratory methodologies and analyses employed to understand the genetic landscape of different biological contexts, from conventional techniques to cutting-edge technologies. Besides describing detailed aspects of the polymerase chain reaction (PCR) and derived types as one of the principles for many novel techniques, we also discuss microarray analysis, next-generation sequencing, and genome editing technologies such as transcription activator-like effector nucleases (TALENs) and the clustered regularly interspaced short palindromic repeats (CRISPR) and CRISPR-associated (Cas) systems. These techniques study several phenotypes, ranging from autoimmune disorders to viral diseases. The significance of integrating diverse genetic methodologies and tools to understand host genetics comprehensively and addressing the ethical, legal, and social implications (ELSI) associated with using genetic information is highlighted. Overall, the methods, procedures, and applications in host genetic analysis provided in this chapter furnish researchers and practitioners with a roadmap for navigating the dynamic landscape of host-genome interactions.

Employee Acceptance for AI Based Knowledge Transfer: Conception, Realization and Results of an ELSI+UX Workshop

German companies are currently facing challenges like the Demographic Change. Due to the retirement of many long-standing employees, companies risk losing tacit experimental know-how. This specific type of knowledge is difficult to capture and transfer to unexperienced workers. The objective of the research project “KI_eeper - Know how to keep” is to solve this challenge by using Artificial Intelligence (AI) for the development of a self-learning assistance system. Knowledge transfer as well as AI can cause fears among workforces, which hampers user acceptance of new AI-based tools. Therefore, the employees got proactively involved from an early development stage on through different measures, like e. g. workshops and process analyses. In particular the ELSI+UX workshop openly embraces potential challenges of AI implementation and the fears of employees. Furthermore, the employees get the chance to provide direct feedback about the technical solution of how user-friendly it is for their work process. This contribution focuses on the conception and realization of an ELSI+UX workshop. In the workshop the ethical, legal and social implications (ELSI) as well as user experience (UX) of the technical conception were assessed by the employees. This approach promoted substantial progress of the project and nurtured user acceptance of the AI system.

A Proposed Research Agenda for Ethical, Legal, Social, and Historical Studies at the Intersection of Infectious and Genetic Disease.

Over the past two decades there has been a rapid expansion in our understanding of how human genetic variability impacts susceptibility and severity of disease. Through applications of genome-wide association studies, genome and exome sequencing, researchers have made thousands of discoveries of genetic variants that impact risk of common and rare disorders affecting millions of people. Although these techniques have been primarily applied to highly prevalent chronic disorders such as diabetes1 and cardiovascular disease2, infectious diseases have proven to not be immune to genome-wide association, with studies of Tuberculosis3, HIV4 and SARS-CoV25, to name but a few, identifying host susceptibility loci across the genome. Unlike non-communicable diseases, infectious diseases have the unique element of impacting not only the affected the host, but those who may be most vulnerable to acquiring the infection. Thus, genetic variants that impact one individual's susceptibility to and severity of an infection may also have broader implications to public health, as was brought into keen focus during the COVID-19 pandemic. Therefore, as we begin to apply the knowledge gained from genomic studies in the clinic or into policy, there are unique ethical, legal, and social implications (ELSI) at the intersection of infectious diseases and human genomics. In this issue of the Journal of Law, Medicine and Ethics, Jose et al attempt to address this need by proposing a research agenda for ELSI studies at what they term the "blurred boundaries" of infectious and genetic diseases.6.

ScreenPlus: A comprehensive, multi-disorder newborn screening program

The increasing availability of novel therapies highlights the importance of screening newborns for rare genetic disorders so that they may benefit from early therapy, when it is most likely to be effective. Pilot newborn screening (NBS) studies are a way to gather objective evidence about the feasibility and utility of screening, the accuracy of screening assays, and the incidence of disease. They are also an optimal way to evaluate the complex ethical, legal and social implications (ELSI) that accompany NBS expansion for disorders. ScreenPlus is a consented pilot NBS program that aims to enroll over 100,000 infants across New York City. The initial ScreenPlus panel includes 14 disorders and uses an analyte-based, multi-tiered screening platform in an effort to enhance screening accuracy. Infants who receive an abnormal result are referred to a ScreenPlus provider for confirmatory testing, management, and therapy as needed, along with longitudinal capture of outcome data. Participation in ScreenPlus requires parental consent, which is obtained in active and passive manners. Patient-facing documents are translated into the ten most common languages spoken at our nine pilot hospitals, all of which serve diverse communities. At the time of consent, parents are invited to receive a series of online surveys to capture their opinions about specific ELSI-related topics, such as NBS policy, residual dried blood spot retention, and the types of disorders that should be on NBS panels. ScreenPlus has developed a stakeholder-based, collective funding model that includes federal support in addition to funding from 14 advocacy and industry sponsors, all of which have a particular interest in NBS for at least one of the ScreenPlus disorders. Taken together, ScreenPlus is a model, multi-sponsored pilot NBS program that will provide critical data about NBS for a broad panel of disorders, while gathering key stakeholder opinions to help guide ethically sensitive decision-making about NBS expansion.

Ethical considerations for genetic research in low-income countries: perceptions of informed consent, data sharing, and expectations in Nicaragua

Genetic research presents numerous ethical, legal, and social implications (ELSI), particularly when the research involves collaborations between investigators in high and low-income countries. Some ELSI issues are universal, and others are specific to context and culture. This study investigates perceptions of genetic research in Nicaragua, Central America, where local and U.S. based researchers have collaborated for over a decade. A total of 43 residents from northwestern Nicaragua, a region with high mortality rates attributed to chronic kidney disease of non-traditional causes (CKDnt), were interviewed, including research participants in ongoing studies (n = 36), health professionals (n = 3), labor leaders (n = 2), and family members of research participants (n = 2). Questions focused on informed consent, data-sharing, and post-study expectations. Audio recordings of interviews conducted in Spanish were transcribed and translated into English. English transcripts were coded and analyzed using NVivo 12 software. The lack of familiarity with terms in the consent form presented a barrier to participant comprehension of key elements of the genetic research study, raising concerns about the validity of informed consent. Research participants often viewed their participation as access to health care. Health professionals emphasized the importance of long-term partnerships between foreign-based researchers and local health institutions. Leaders and family members recommended that they be informed of research studies and allowed the opportunity to consent, as they felt the benefits and risks of research also apply to them. Our findings identified genetic research practices to be improved upon in order to be more responsive to the contextual realities of collaborators living in low-resource settings.