Kelly Ormond

Last Name

Ormond

First Name

Kelly

ORCID

0000-0002-1033-0818

Organisational unit

09614 - Vayena, Eftychia / Vayena, Eftychia

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Publications1 - 10 of 42

Ethical Aspects of Pediatric Genetic Care: Testing and Treatment
Ormond, Kelly; Blasimme, Alessandro; Vayena, Effy (2023)
Pediatric Clinics of North America
Grounded in Reality: Integrating Community Values and Priorities of End Users in Human Gene Editing
Riggan, Kirsten; Feys, Roel; Kokayi, Assata; et al. (2024)
The American Journal of Bioethics
Expanding Our Thoughts about Autonomy in Relation to Whether We Should Offer Genetic Testing for Nonmedical Traits
Ormond, Kelly (2023)
The American Journal of Bioethics
Building Better Medicine: Translational Juﬆice and the Quest for Equity in US Healthcare
Allyse, Megan A.; Agam, Preya; Bombard, Yvonne; et al. (2025)
The American Journal of Bioethics
Despite considerable scientific progress and the evolution of regulatory pathways to ensure safety and efficacy, US healthcare continues to see increasing health disparities. This suggests that clinical translation in of itself cannot be the only measure of its own success, especially when the most marginalized patients, are neglected in the development and implementation of medical innovations. This raises the question of whether a system that is narrowly focused on technical achievement can meet the moral obligations of medicine and public health. We argue that traditional technocratic standards are failing to integrate normative considerations into biomedical translation. What is needed is a translational domain that moves beyond safety and efficacy toward anticipating how proposed technologies will be effective in society as it exists. We propose an additional metric of success: translational justice.
Experts’ perspectives on human gene editing in Switzerland
Berlincourt, Jade; Gächter, Sumanie; Vayena, Effy; et al. (2025)
Journal of Community Genetics
Despite many specialized studies on the views of the public or stakeholders who face inherited conditions that may be treatable by HGE, limited studies have focused on experts’ views towards Human Gene Editing (HGE). Therefore, in this study we conducted exploratory interviews with 14 experts (scientists, clinicians, social scientists, lawyers) in Switzerland to assess their views towards HGE and how they expect the Swiss public to view HGE. We found general acceptance of Somatic Gene Editing (SGE), but opinions towards Germline Gene Editing (GGE) were more divided. Participants emphasized patient autonomy and informed decision-making in pursuing gene editing treatments, and described a need for regulation, as with any other new therapy. Only a few participants (mostly lawyers and ethicists) described the regulations that currently prohibit GGE in Switzerland. Some expressed concern that restrictive regulations would lead to healthcare outsourcing and medical tourism to other nearby countries, as it has in the past with other restricted technologies. The analysis explored the unique Swiss context that is shaped by cultural diversity, conservative attitudes towards new medical technologies, and a democratic system that engages the public in policy and law making. Given that our findings identify areas of difference from that published in other countries, we emphasize the value in conducting similar research across different countries in order to achieve a global sense of attitudes towards HGE, so that regulations can be tailored to the diverse needs of citizens around the world.
Une nouvelle profession qui soulève des questions
Ormond, Kelly (2022)
Bulletin des médecins suisses
Encore peu connue en Suisse, la profession de conseiller en génétique peut contribuer à améliorer la prise en charge des patients lors d’une analyse génétique, selon le rapport de la commission fédérale ad hoc. Cependant, elle soulève aussi d’importantes questions. Le présent article vise à éclairer ces points.
Patient experiences with clinical confirmatory genetic testing after using direct-to-consumer raw DNA and third-party genetic interpretation services
Nguyen Dolphyn, Tiffany T.; Ormond, Kelly; Weissman, Scott M.; et al. (2023)
Translational Behavioral Medicine
Lay Summary The availability of raw DNA data and online genetic interpretation tools allow individuals to access genetic health risk information, where false-positive results exist. Little is known about the experience of individuals who discover disease-causing variant(s) through raw DNA interpretation and follow-up with medical-grade confirmatory genetic testing. This qualitative study describes the experiences of individuals who pursued medical-grade confirmatory genetic testing in the U.S. after they discovered a potential disease-causing variant in a raw DNA interpretation report. Individuals participated in semi-structured interviews, which were transcribed and inductively coded to identify themes. Of the 12 participants, 3 received medical-grade genetic testing results that confirmed disease-causing variants noted in raw DNA interpretation reports, and 9 were not confirmed. Nearly all participants described emotional distress and information-seeking behavior after discovering a disease-causing variant in raw DNA interpretation. When pursuing confirmatory genetic testing, many faced challenges with finding knowledgeable healthcare providers and obtaining insurance coverage. Despite reporting concerns over raw DNA interpretation and a desire for more safeguards, almost all participants stated interest in using the service again. Overall, participants' experiences reveal they find personal utility in raw DNA interpretation results and provide insight into opportunities for patient and provider education.
How Interactive Visualizations Compare to Ethical Frameworks as Stand-Alone Ethics Learning Tools for Health Researchers and Professionals
Sleigh, Joanna; Ormond, Kelly; Schneider, Manuel; et al. (2023)
AJOB Empirical Bioethics
Background Despite the bourgeoning of digital tools for bioethics research, education, and engagement, little research has empirically investigated the impact of interactive visualizations as a way to translate ethical frameworks and guidelines. To date, most frameworks take the format of text-only documents that outline and offer ethical guidance on specific contexts. This study’s goal was to determine whether an interactive-visual format supports frameworks in transferring ethical knowledge by improving learning, deliberation, and user experience. Methods An experimental comparative study was conducted with a pre-, mid-, and post-test design using the online survey platform Qualtrics. Participants were university based early-stage health researchers who were randomly assigned to either the control condition (text-only document) or the experimental condition (interactive-visual). The primary outcome variables were learning, (measured using a questionnaire), deliberation (using cases studies) and user experience (measured using the SED/UD Scale). Analysis was conducted using descriptive statistics and mixed-effects linear regression. Results Of the 80 participants, 44 (55%) used the text-only document and 36 (45%) used the interactive-visual. Results of the knowledge-test scores showed a statistically significant difference between participants’ post-test scores, indicating that the interactive-visual format better supported understanding, acquisition, and application of the framework’s knowledge. Findings from the case studies showed both formats supported ethical deliberation. Results further indicated the interactive-visual provided an overall better episodic and remembered user experience compared with the text-only document. Conclusions Our findings show that ethical frameworks formatted with interactive and visual qualities provide a more pleasing user experience and are effective formats for ethics learning and deliberation. These findings have implications for practitioners developing and deploying ethical frameworks and guidelines (e.g., in educational or employee-onboarding settings), in that the knowledge generated can lead to more effective dissemination practices of normative guidelines and health data ethics concepts.
The impacts of pricing and reimbursement policies on access to cell and gene therapies across Europe
Han, Yi; Andreoletti, Mattia; Minssen, Timo; et al. (2026)
Journal of Community Genetics
The increasing number of expensive cell- and gene-based therapies (CGT) on the market have raised concerns regarding equal patient access, regarding both affordability and timely access. Health Technology Assessments (HTA) and Managed Entry Agreements (MEA) play a pivotal role in pricing and reimbursement (P&R) decisions for expensive drugs in Europe, aiming to ensure patient access while optimizing resource allocation. However, discrepancies in HTA and P&R processes lead to delayed, unequal or lack of access in different countries, exacerbating health inequalities across Europe. Though they facilitate access, MEAs introduce additional delays in pricing and reimbursement discussions, and their lack of transparency increases administrative burden and encourages pricing inequity, negatively affecting healthcare system sustainability. Recent legislative changes under Regulation (EU) 2021/2282 have established the Health Technology Assessment Coordination Group (HTACG), which will oversee mandatory joint clinical assessments in the coming years. This new legislation aims to streamline HTA processes across the EU. To address the ethical imperative of improving access equality for CGT in Europe, we propose further policy reforms including concurrent HTA, early benefit assessment, and incorporation of additional elements of value in HTA evaluations, alongside current initiatives to increase cross-border collaboration.
Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey
Brall, Caroline; Berlin, Claudia; Zwahlen, Marcel; et al. (2022)
BMJ Open
Objectives This article aims to measure the willingness of the Swiss public to participate in personalised health research, and their preferences regarding data management and governance. Setting Results are presented from a nationwide survey of members of the Swiss public. Participants 15 106 randomly selected Swiss residents received the survey in September 2019. The response rate was 34.1% (n=5156). Respondent age ranged from 18 to 79 years, with fairly uniform spread across sex and age categories between 25 and 64 years. Primary and secondary outcome measures Willingness to participate in personalised health research and opinions regarding data management and governance. Results Most respondents preferred to be contacted and reconsented for each new project using their data (39%, 95% CI: 37.4% to 40.7%), or stated that their preference depends on the project type (29.4%, 95% CI: 27.9% to 31%). Additionally, a majority (52%, 95% CI: 50.3% to 53.8%) preferred their data or samples be stored anonymously or in coded form (43.4%, 95% CI: 41.7% to 45.1%). Of those who preferred that their data be anonymised, most also indicated a wish to be recontacted for each new project (36.8%, 95% CI: 34.5% to 39.2%); however, these preferences are in conflict. Most respondents desired to personally own their data. Finally, most Swiss respondents trust their doctors, along with researchers at universities, to protect their data. Conclusion Insight into public preference can enable Swiss biobanks and research institutions to create management and governance strategies that match the expectations and preferences of potential participants. Models allowing participants to choose how to interact with the process, while more complex, may increase individual willingness to provide data to biobanks.

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Kelly Ormond

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